35 Burst results for "Fibrosis"
"fibrosis" Discussed on The Doctor's Farmacy with Mark Hyman, M.D.
"A growth hormone production in the body. So I think, you know, there are people who do need growth hormone, kids who aren't growing, for example. I think if you have growth hormone deficiency, which is a unique condition, can be caused by a tumor in the brain. Or by surgery, radiation, there's different reasons why you can get growth hormone deficiency. But it may be necessary. But for most people, I really don't think they should take it. But you can get your growth hormone up naturally by exercise by arginine and by sleep. Okay, super helpful for that. And obviously, one of the many reasons that sleep is so important for kids too. So they can keep growing. Exactly. So on to our next question, what is the difference between reactive hypoglycemia and regular hypoglycemia? A regular hypoglycemia is if you're fasting or you have any eating for a long time, you can get low blood sugar. Reactive hypoglycemia happens after you eat a meal. And remember, a patient had years ago, a couple actually really striking. One was this guy who was a Wall Street executive. And he would work late, go outlaid, eat a lot, drink a lot. Eat crappy food, desserts, everything. And then you go to bed. And I need to wake up and then he would kind of early afternoon. He would really think he was dying. He would get palpitations, anxiety, sweats, shaking, lightheaded, you know, just like literally feel like he was dying. And he didn't know it was wrong. He thought he was having a heart attack and I just took his history of my, you know, you probably have hypoglycemia because your body is going into this huge meal, crashing your blood sugar. And people can get it at night too, if you have a big meal at night, people who have night sweats for example, men get night sweats, not just women, if they have low blood sugar at night as a result of having a big carb meal at night, which will then cause a spike in their blood sugar, spike in insulin, and then they'll crash, and then they'll be having symptoms of hypoglycemia. And it's a life threatening emergency. Do you feel like your blood sugar is dropping? Your body goes into total sympathetic overdrive. And increases cortisol stress hormones. And it does so to kind of mobilize sugar to build gluconeogenesis from proteins and other things that can actually kind of make your blood sugar stay high so you don't die. So it's pretty common. And most people kind of don't really get what's going on. I had another patient, the same thing. He was sort of a guy with a big gut and kind of had a crappy diet and a lot of carbs and sugar and he would get these episodes where he would get this full panic attack and think he was dying. And I said, well, what happens? Well, then I drink a can of Coke and it goes away. Because basically it just gets a blood sugar up these fine. So the solution is just eating more high quality fat, protein, which evens at your blood sugar, avoiding starch and sugar, and that usually helps quite a bit. Okay, super helpful. So our next question is about your favorite supplement probably. I'm going to guess is vitamin D so what are the possible reasons that a person who has a vitamin D deficiency has a hard time raising their levels and is there any way to raise your levels if you are in fact having a hard time? Yeah, so there's a real genetic variation in our absorption of vitamin D and we do measure genetics of vitamin D absorption vitamin E receptors. And so there is variability. Some people will be able to get their levels up with a thousand units a day, some people need 5 so many, 10,000. So it's really about not just checking your amount you're taking, but how much is in your blood. And that's something we can each measure with a blood test. I think there can be absorption issues if you have fat malabsorption, for example, if you have cystic fibrosis, if you have poor pancreatic enzyme function, which can happen if you have certain intestinal parasites, there's things that can impair absorption of fat soluble vitamins. And sometimes fixing whatever the causes of that is important from them taking digestive enzymes with fat soluble sort of lipase and things that digest fat is really good. Also eating fat with your vitamin D is really important to that helps the absorption of vitamin D so I think those are the reasons I need more vitamin D well, I hope you enjoyed that teaser
"fibrosis" Discussed on DNA Today
"Last episode, we learned about noninvasive prenatal testing and IPT for recessive conditions through billion to one's unity screen. Jen huskins is back for this episode where we are exploring NIPT for fetal antigens this time, which I know less about, so I'm very excited for this. For those that haven't listened to that last episode, Jen is billion to one's senior director of medical affairs. And I really do recommend for everyone to listen to that episode before this one because I think there's going to be a really nice segue between the two we recorded them in that order. So that you could listen to it in that order. And again, we were talking about NIPT for recessive conditions, but Jen, for those that aren't going to hit the pause button because their hands are soapy with water because they're watching dishes. They're doing whatever they're in the car. Could you give us a quick refresher of what NIPT is? Absolutely. Yeah, thanks for having me. So NIPT, most people are familiar with NIPT as a technology that's used to screen for fetal aneuploidy, like down syndrome, and similar conditions. And we are taking the same idea, but tweaking the technology a bit. And looking at cell free DNA, which is free floating DNA in the mother's bloodstream. And using sequencing as well as some molecular counting. So a bit of a novel technology to assess the likelihood that the baby has inherited two variants from the same gene like cystic fibrosis or sickle cell disease and is at high risk to be affected with the condition. It is impressive how far an IPT has come in the last ten years because it's 2011, 2012. I can never remember which one it is. What year was a clinically available? Do you remember? Yeah, 2011. 2011. All right, I got to get it into my head. Maybe that's why I get confused because it was the end of the year. I also wasn't practicing yet. This show had just started. But yeah, so it's interesting because as you were referencing, we started with chromosomal conditions, like down syndrome, traced me 13, 18 sex chromosomes. But it's really interesting that now we're starting to use it and really you guys seem to be the leaders in the market in terms of looking at it for recessive conditions. I haven't heard of another company doing that. Listeners email in, but I'm pretty sure they're the only ones doing it. But we're kind of focusing today as we're continuing this kind of part two of our conversation, but we're focused on billion to one's launch of an antigen version of NIPT in the fall of 2022, right? It was end of last year. Yes, yes. Just this mass fall. Yeah. So provided some background.
"fibrosis" Discussed on The Readout Loud
"Our stat colleague at silverman wrote a story this week about vertex, insurers, and the patients caught in the middle. He joins us now to discuss it. Welcome back to the podcast Ed. Hi, thanks for having me. So Ed, we'll get it to the complexities of this fight in a moment, but first tell us about Dan bricky and his two year old daughter. Well, the brickies live about an hour and a half south of Salt Lake City. And they have three small children, two of them are two year old twin daughters, Dan bricky is a nurse in a local hospital. His wife, Christy, is a kindergarten teacher, and their challenge is that one of their twin daughters two year old alley has cystic fibrosis. And they more or less were able to manage her disease and the complications, but they ran into a financial snag late last year and that's where the story picks up. So tell us about what that financial snag was and the importance of the medicine the alley was taking. Ally was taking or is still taking a cystic fibrosis medicine, one of few manufactured by one particular company called vertex pharmaceuticals, and basically it helps her manage the disease. There are other medicines and other forms of care. There are typically required for anyone who has cystic fibrosis, but is helping her to function. And that's the key bottom line important goal, and it was working for her. The brickies one day were notified that their health plan circumstances, let's call it were changing. It's very complicated, and a lot of it involves behind the scenes machinations, but the bottom line was they'd suddenly have to start paying a lot more for their daughter's medicine. On an annualized basis, it was going to jump from a $180 for their out of pocket costs for a year. To approximately $43,600 this year, 2023. They didn't see it coming. There's no way they could have, they simply learned of it in the fall just before what's called open enrollment season when many Americans are sitting down trying to figure out which health plan they should choose, whether it's offered by an employer or it's a government program. So on top of the surprising and very large increase, the timing was also quite inopportune. And so as you get in your story, the reason for that increase was that vertex was changing its co pay assistance model. Basically a program in which drug companies will help cover the copay costs for patients and families who get their drugs. And so, you know, the natural reading is like greedy drug company doing thing to pry more money from patients. But as your story makes clear, it's a lot more complicated than that. Vertex is reasons for doing this. Why did vertex slash its co pay assistance? Well, yes, it's very complicated and really it's rooted in its sort of chicken or the egg situation. Cystic fibrosis like a lot of diseases requires a lot of research to come up with useful effective medicines and we've seen over the years medicines for these so called specialty, hard to treat chronic diseases, end up with large price tags. And so what happens behind the scenes is that the insurance companies feel that they're paying too much of the freight, the drug companies, however, try to help the patients with their out of pocket costs because the patients are in the middle of this whole chain here. The drug companies and not just vertex typically will offer copay assistance. It's a form literally of assistance, maybe it's distributed in the form of a card or coupon, but it's supposed to help the patient with their out of pocket costs. And that pretty much is moving along until a few years ago. When the health insurers decided to fight back, and come up with an insurance tool that would make it more difficult for the drug companies that were offering the assistance. So Ed explained to us why insurance companies object to these co pay assistance programs. For the outside looking in the co pay assistance programs look like a benefit to the patient. The drug companies offer these programs in the form of a coupon or a card to help the patients afford the medicines by essentially minimizing the out of pocket and deductible costs. But the health insurers claim it's really a ruse because these are, in this case, certainly with a cystic fibrosis medicine, it's again it's a chronic heart to treat disease and the medicines have high price tags. The health insurers claim, well, this copay assistance really just helps the patient think that, well, I'm getting a financial benefit from the manufacturer, so why should I worry what the price tag is? And the health insurers claim that this actually perpetuates a problem in the healthcare system because it does not dissuade the patients from becoming more judicious about the financial cost of the medicine they take. Maybe there's an alternative medicine for some people who have some illnesses, but they have no incentive to look for an alternative if the manufacturer gives them copay assistance. And for this reason, the health insurance industry believes that co pay assistance really does not do anything to ring costs out of the healthcare system. It's simply memorializes or perpetuates a desire to take whatever medicine is available regardless of cost. And that raises costs to the whole healthcare system. And you mentioned insurers now have these complicated tools to try to fight back against this. And one of them is called a copay accumulator. Can you explain what those do? I'll try. It's a really wonky turn. And actually, this tool has been around a few years already. But it's only recently getting a lot more attention. Than any of an accumulator is something that insurance company, a health plan, will put in place, so it doesn't count the value of that copay assistance that's provided by the drug company toward the patient's out of pocket drug costs. So in other words, the patient still has the out of pocket maximum and deductible to meet without the added benefit of the copay assistance from the drug company. The bottom line, as a result is, patients are on the hook for overall higher costs. And the only time that they wouldn't see that is if the copay assistance from the drug company is so large that it will continue to cover all of the out of pocket expense anyway. And so that brings us to vertex deciding to slash its co pay assistance, which is where we started. With the bricky family and in your story, you quote the chair of the cystic fibrosis foundation, center committee saying vertex quote is playing chicken in hopes of getting patient groups to put pressure on insurers to change their policies Vis-à-vis these co pay accumulators. Are there signs that that's working or is there another potential resolution to this issue? Because as this is being fought out, as you mentioned, the people who are enduring a negative outcome are the people whose drug costs are posed to skyrocket conceivably if they don't change plans or find some way of ameliorating it.
"fibrosis" Discussed on WTOP
"To avoid fake accounts, customers who want to get the blue badge would need to show a government ID and be 18 or older. The vaccine technology used to fight the coronavirus could also be used to treat other diseases has been the staple in fighting COVID-19. The Australian development director Tim mursa says researchers found there are greater uses. And we started to think maybe mRNA provides an additional tool or an additional strategy. And that strategy is to treat cystic fibrosis. They also want to go further by developing a melanoma jam. He says the vaccine technology is promising, and such treatment could become the norm in just a few years. Scott maiman for CBS News, Canberra, Australia. 6 54, you may want to check your water bottle. There's a popular one being recalled. It's been all over Instagram. It was one of Oprah's favorite things. And now it's been recalled. Sip and stash water bottle was found to contain alarmingly high lead levels. Consumer reports tested a ceiling dot found in the bottom storage compartment, which the company for years had described as being food safe. It measured over 1000 times the amount of lead allowed in many consumer products. So now bendel's doing a voluntary recall and telling people to not use the bottom storage compartment until they get a free repair kit. You can get that on their website. Stacy Lynn CBS News. It is 6 54. These warm in the normal winter temperatures have us all scratching our heads. It's confused even the cherry trees. The National Park Service says it's very likely that cherry blossoms along the tidal basin will bloom early this year. We'll keep you up to date on that one, of course. It's 6
"fibrosis" Discussed on DNA Today
"There are only two potential cases that you need to think about. One of the cases is when the maternal and paternal mutations are different. So in that particular case, it is just a detection problem. So your instead of trying to quantitatively count anything, you just essentially need to see in cell three DNA if there are any mutations that don't belong to the mother. So that would mean that not only the father, the father of the baby, is actually a carrier, but also that the baby has inherited that mutation. So that would bring your risk to actually one in two, already better than what kind of a traditional carry screening would be able to do. And a lot of the kind of cases are just that compounded or zygotes. But the place where I think we do really well is family look at the maternal location. And this is a more difficult problem, as you said, because you already have that background that is coming from the mother. So it's not just about being able to detect something. It is being able to quantify that particular location. And what we have really done is essentially we have perfected the method of quantification of self read DNA. So we developed a technology that allows us to count DNA molecules as a single count level. And then if you can do that, then the problem becomes really straightforward. All the maternal contribution is going to be one to one. So if there are 2000 molecules that have, let's say, the most common cystic fibrosis mutation F 5 four 8 deletion. There are going to be 2000 molecules that don't have that mutation. And if the fetus is also a carrier, the fetal contribution is also going to be one to one. So when you come to molecules, you will find that there are equal numbers of wild type, normal molecules, and the mutant disorder molecules.
"fibrosis" Discussed on DNA Today
"But less people are aware of recessive conditions. So what's the risk of having a pregnancy actually be affected by a recessive condition, not the chances of someone being a carrier, but the chance for pregnancy to actually be inheriting a recessive condition, like you mentioned, cystic fibrosis and sickle cell. The combined probability of a baby being affected by one of these conditions is actually collectively even more common than down syndrome. And the carrier rates are actually almost one in 6 pregnancies found to be a carrier just by the acog recommended conditions as well. So it does create, I think, a lot of burden to really try to test the mother, test the father, do all the follow ups up in the traditional carrier screening workflow. And build the unfortunate thing is that even though they are kind of more common or as common as down syndrome and with potential treatments and improvements as well now with all the upcoming therapies, there is a significant percentage of pregnancies that are being missed due to various problems in a multi step workflow that we alluded to. So by kind of streamlining this workflow, I think we can really make a large impact in being able to detect these disorders. And it might come across almost as surprised that these disorders are kind of as common as down syndrome, especially when we look at it collectively. And I think part of that is because these are a little bit of hidden disorders in some ways. When a baby is delivered, it is almost immediately known whether the baby has down syndrome or not. But it is usually the newborn screening with a different provider with a pediatrician that is coming back as the baby failing the newborn screening. And by that point, a lot of the times o-b-gyns don't even know that during that pregnancy, a particular disorder was missed.
"fibrosis" Discussed on Bloomberg Radio New York
"Test And it was very very very frustrating I remember there are these people who drive their Porsche into my office and I'd say you know you really need to have cystic fibrosis carrier testing and they say it doesn't insurance government And I'd say well let's check and know your insurance doesn't cover it And they'd say well then I don't want to have it And I felt like shaking them saying you know get the goddamn test I don't know if I can say that on the radio One of the reasons I went to Quest Diagnostics because of quest diagnostic had relationships with all the major insurance companies and so what I wanted to do is make these tests available to the general public And I feel very proud that I was able to accomplish that So we moved to sequencing and we moved to all the major platforms and it was a great experience I learned pathologists in general It's interesting there have been wars between pathologists and geneticists Because pathologists feel that they own the rights to all testing It's done on humans Geneticists said hey you guys don't know how to do the specialized things that we do And so every hospital had this kind of give and take between who is going to do karyotypes looking at chromosomes who is going to do DNA testing What's it going to be the pathology of the environment What's it going to be the genetics department And when I got the Quest Diagnostics which is a pathology company I learned from them I learned about quality assurance.
"fibrosis" Discussed on SI Media Podcast
"And it is all a part of creating that platform so I can get my voice heard for something that affects only about 30,000 people in our country. And you know, here we are almost $200 million later. And Gunnar is now 30 years old when he was diagnosed Jimmy. He was expected to live to about 19, maybe go to college and not only is he living. I mean, as you just pointed out, he got married last year. They just had their first baby. He is the biological father, which is virtually unheard of in the cystic fibrosis world. They did IVF and he is the biological father. So he took a needle to the area that you and I would not want to take an evil too. In order to become that father. So all of this stuff that I've been trying to do over the years, while it's great for me, it's great for our family and I do very well financially. It's also to promote what we were doing cystic fibrosis wise. And that I'll never make an apology for and I'll continue to do that as long as that need is still out there. I felt like a jerk because I would say myself, I don't know why this guy does this. And then when I read that, I said, well, now it makes sense because I just look at it from the standpoint of like, okay, he's doing a radio show at 6 a.m. on Monday doing a game Monday night and then he's on the radio. So then I read that and I'm like, well, now it'll be because I will say, you know, not to kiss your ass because you're on here, but if you go through what any athlete is done with any charity, I'm not sure anything will ever talk what you guys have done with cystic fibrosis from the money you've raised the awareness and then you point it. And I have to say, I had a little fun at your expense with your son when he got married because I wrote you so I just wanted for the listeners get it clear..
"fibrosis" Discussed on Living to 100 Club
"Is this related to what you're talking about? Yeah, it is exactly. And I think one of the ways in which this sort of point was made quite clearly is in studies of identical twins who have the absolutely identical genetic makeup or the genetic blueprint and yet depending on how they love what lifestyle choices they make, they may end up looking quite different. And what makes them look quite different is the epigenetic changes to the way their genes work depending on what sort of factors impacted it. So that's exactly what it's all about. Yeah, that's fascinating. So if we have a genetic predisposition toward a certain disease, in a certain medical condition, are you saying that that is susceptible to change and we can maybe modify the risk of that genetic predisposition? I think you one has to differentiate between diseases or problems that are caused actually by mutations in the gene itself. So epigenetics does not change the structure of the gene. In any way, what it simply does is regulate how that gene may or may not be expressed. So I'm not aware that there are ways, for example, if you have a gene for something I've cystic fibrosis, epigenetic regulation isn't going to be able to affect that. Yeah, so what we're talking about are sort of multi multifactorial kinds of things. Like weight like deposition of body fat, like a regulation of lipid metabolism, cardiovascular functions. So when so it was really interesting the study that was reported in, I guess, 2009 in science, looking at how caloric restriction enhances longevity and calms down or delays the development of the so called age relating related disorders..
"fibrosis" Discussed on Wake Up With Gratitude
"And so the first time that they came to play with our family. You know like any play date halfway through you say well. Let's have a snack. Nobile could sit down. Have a snack take a break from playing. And we realized that he can't just sit down and have a snack like everyone else because he has this strange thing called. Cystic fibrosis that. We never knew anything about. So we got a lesson about. How you know. Cystic fibrosis is something. That affects a lot of children it's a gene. That's carried by the parents. And you never know if the person that you're partnering with has a similar gene. It's going to pair up and causes child with cystic fibrosis. They had their first child. Who didn't have cystic fibrosis. And then their second child did and neither one of them knew that they had the possibility of of carrying best. But it's something that can happen to any family so it affects him It affects whole family every day of their lives. He has two breathing treatments every morning. And every thing It affects his lungs. He's very vulnerable to lung infections. But it also affects his nutrition which is where it came into the snack where he has to take pills at every meal his enzymes they call them so that he can. His body can absorb the nutrition from the food that he eats may have to be very careful and very strict diet and the more we got to know this family. I'm became close friends with them. We realized just how it affects every aspect of their life. Not just from going out to a store. They have to be a little bit more careful that he's not going to come into contact with some something that could give him an an infection because his body's not able to fight it off as well as others and how these breathing treatments he's they've got to be home at five o'clock every night. The play cannot run longer than that because he has to have his breathing treatment..
"fibrosis" Discussed on Dr Ron Unfiltered Uncensored
"So estrogen is of bali. Estrogen is the hormone of fibrosis and death. Estrogen is a hormone that causes us to lose our muscle mass which causes us to lose bone density. Because you can't have density without multiple math and ask between is what causes the internet oregon's to grow fibrosis and shrinking diminishing function so all that is the part of the plan dubbed the lesson to the un body to get get us off the planet. We're not supposed to be here after we get babies anymore. you know. Think the caveman. And the paleolithic men and then the neolithic and all the middle aged people old age with forty. If they made it to fifty they were going to be really old. Jesus time in the middle east. If you made it to seventy you were considered to be dead with. Jesus said You know what the dead be. Today's or you know whatever he meant those over seventy 'cause that's what it meant in hebrew thought so we're very lucky that we're living through the ages that were living jew now but we really have to do the things to maintain the structure in order for that to have a. That isn't just laying in bed. Getting diaper's changed and and watching game shows..
"fibrosis" Discussed on Dr Ron Unfiltered Uncensored
"So Bali estrogen is the hormone of fibrosis and death. Estrogen is a hormone that causes us to lose our muscle mass which causes us to lose bone density. Because you can't have o- without multiple math and ask between is what causes the inter oregon's to grow fibrosis and shrinking diminishing function so all that is the part of the planned obsolescence to the un body to get get us off the planet. We're not supposed to be here after we get babies anymore. you know. Think the caveman. And the paleolithic men and then the neolithic and all the middle aged people old age with forty. If they made it to fifty they were going to be really old. Jesus time in the middle east if you made it to seventy. You were considered to be dead when jesus said You know what the dead most. Today's door whatever he meant those over seventy 'cause that's what it meant in hebrew thought so we're very lucky that we're living through the ages that were living jew now but we really have to do the things to maintain the structure in order for that to have a life. That isn't just laying in bed. Getting diaper's changed and and watching game shows..
"fibrosis" Discussed on DV Radio
"And let me say never seen somebody who has elucidated off of ammonia. because they can't piss. It's not the best thing i've been there. I don't remember anything happen but that night was probably an eye opener on how bad somebody can get not just with kidney stones but anything like holy fuck. You know my mother. She passed away a few years ago. she was kind of a similar situation was shoes. Big girl She was on a lot of different antidepressants. Her whole life medicine and her husband wanted hospital and she went in with him. Well he came out of the hospital she never did it put like that. She was in there. She passed because she started breeding issues. Diagnosed with idiopathic. Pulmonary fibrosis her lungs. Were it hardening up so they give her the steroid that would giver time. You know maybe a couple years just depend. It was combating her Packs on a bill that she was taking so they had to make the hard decision to either give her her packs on vilified in have minimal time be coherent inside your goodbyes or give her steroids. In basically she's going to be in a catatonic state for as long as she's breeding. Basically if you not a vegetable but just catatonic sitting there like a dead weight. Basically anna i. I know this is going on sympathetic. But basically a vegetable at the end of the day right. Yeah yeah so but there was on get my wife tell made. It was like two nights before she passed away. She she'd been on for pets on vilifies issues a lot of serious moments and they had to strap her to the bed because she started going so crazy she thought the room was filling up with water. She was germany. Damn freaking yeah definitely not gonna go into detail. You know my grandma's last week here at home but it that's like when she came home from hospice and we didn't want to send her to hospice they. That's one thing.
"fibrosis" Discussed on The Struggling Scientists
"And i've been uunet hats. A higher chance of Heart problems heart disease and cardiovascular effects like a hard effort that rid meows and also sudden death and a lot of the times. Of course you think that you are improving your heart health with running so this this was this was weird to me. So of course. Scientists have been transfigured his out naturally saw in a veteran athletes. Leeds debt. They have a lot more calcification in their arts which is not cool to of course. That doesn't sound healthy but makes it basically sign that you had a lot of heart damage damage that has been repaired and also a lot more fibrosis than a normal not veteran at late against the known that all nutley type which is also not a very good thing for your heart because it also shows that over time you had a lot of damage and they actually looked in one study at twelve lifelong veteran athletes and these were people that either had run more than one hundred marathons in her life or were olympian. So really high athletes no the olympians. You know the the good ones and they actually found a niche twelve. That six of them had a real showed real myocardial fibrosis and quite bad. Also and that four of these had that with greedy not a specific calls Probably running you know nothing shown to be ha happening. One had previous myocarditis in one already had A silent mike guardian infarction and these were twelve people that showed no secrets here. Symptoms didn't have any self reports in dems but they fifty percent of them. Six of them did have are damaged. Chaba shown emmerson emery And compared to the h. Mets grins and the young athletes. They had nothing. There was no persian having this hard damage. And all the fifty percent of the athletes haddad's which is a lot and then especially in these people were actually probably guided well and at least took very seriously in trained well and did a lot for his. You'll still they still at these or h you're fifty plus had had heart damage and also this vacation. That was her another article v. Show that Let me check that fettes. Remembered runnings had a higher coronary artery. Gulfstream scores And that my increase your risk of this corner new york. Do you heard disease. And everything says they also measured that in fact grin. Marathon runner dead. They have a gentle getting that. That is something. I didn't really expect. I thought that being marathon runner men that you were healthier but it does seem to have some long lasting negative effect. The one hundred merit on and you know training at the olympic level is a lot i also showed that you can also do your heart already damage like insured run for and that takes three months to recover so i. Can you imagine if you do that multiple times that you get you get this. You get the fibrosis and you get the goals vacations. And then even when you are a well touring drummer. You apparently still have this so don't do a marathon because you think it's healthy no in the because it doesn't it doesn't seem to be. There are healthy things that you can already gain a think with the shorter things and you marathon only because you wanna prove something to your shell but be careful be as healthy as you can be And they could care for yourself and then we'll just take into account that it's not necessarily healthy.
Gunnar Esiason on Patient Advocacy
"Thank you so much for coming on the show. Thank you. Thanks for having me on. And thanks for following fibrosis over. Yeah it's fantastic to have you just share your experience with cystic fibrosis the patient advocacy that. You're a part of before we jump into all that for people that may be jumping into the series. And don't have a background on cystic fibrosis. What is your elevator pitch when someone says well. What is cystic fibrosis. How can you educate our listeners. Yeah start by saying cystic. Fibrosis is pretty complex It is a recessive. genetic disorder That is most generally associated with restore declined or or or way these But the truth is just if affects just about every single organ in my body and and really what the the problem is is that thickest builds up not only my lungs but also my pancreatic and a few other organs but The the real trouble is is in the lungs. I you know. Classic respiratory disease sticking. You is the perfect medium for Expectations take hold and create any number of issues for people with the aso right now. We we see that. The median age of data for people. Who is early thirties We do expect that that number will increase as be bad. You know had a number of significant Therapeutic breakthroughs over the past years. Think we'll talk about a few minutes But things are looking pretty. Good right now for the cystic fibrosis kennedy. I think they're on the up and up and You know just really What i've long said is that it's probably one of the most significant medical monitoring medical miracles Always be surpassed by the vaccine development over the past year. So we had. We had our moment in some air. But i'm certainly happy to yield. That's why like to the public health success that we were starting to see here.
Shuling Guo on Pharmaceuticals and Cystic Fibrosis
"What is bro says. How does it affect the body Cystic fibrosis all. Cf for sure is dallas being genetic disease. It's one of the most common life threatening inherited. Diseases affecting about seventy thousand people in the world and about half a witch in the united states have has been around for a long long time even in medieval times. They are were folklorist talking about if you kiss a childhood hey saudi. That child will soon die but it was not until the nineteen thirties that this disorder was recognized. Dr dorothy anderson who was a pathologist at that time working at a hospital in new york discovered any name. This disease cystic fibrosis. Since then there has been tremendous amount of research to understand the disease. develop diagnostic tools. And of course develop treatments for this disease when dr arnesen The disease he said something like fake on sticky mucus buildup in the lungs in the pancreas and auto owners leading to life threatening breathing and digestive problems so after so many years of research I think you made quite a bit breakthroughs. For example in nineteen fifty five. A sweat has to became available so this is to really measure the salt concentration in the sweat and this till today is still one of the gold standard for cf screening and then in nineteen eighty nine. The more likely cause of cf was discovered. It was found that it's the defect in the cfpb. G thou these two. Cf
"fibrosis" Discussed on Dr Ron Unfiltered Uncensored
"Everything inside of us begins to become dysfunctional. Now learn this lesson. Produces inflammation inflammation produces indication and duration produces death. This is the way we learned it in school. Okay your attention is life and stress. The result is inflammation inflammation produces interracial. What is immigration and duration is fibrosis chronically..
"fibrosis" Discussed on 77WABC Radio
"In your fibrosis. Five years back, and they couldn't remove it. Because the draft around my lower aorta I also have kidney disease because of it, and I have a stent in the year over there. Recently I was diagnosed with fibromyalgia. And I wanted to ask you. Is there a connection? With the right restaurant parents to the fibrosis and developing fibromyalgia. Fibromyalgia is sort of a catchall term where doctors can't figure out why having some pains love your body. And they gave you that diagnosis. I know this because I've seen many thousands of patients that are told they have fibromyalgia. But some people actually have Lyme disease, and they didn't test it correctly. Or some people actually have, um You know, Lupus or an auto immune disorder and not It was fun analogy is not a diagnostic, You know, end of the term. It's the beginning of the term. It just means you have multiple aches and pains all over. So we have to look at. You know other underlying things. People could have heavy metal. Exposure that's causing their chronic aches and pains. So I wouldn't use Fry. Bro is it is a diagnostic term. I don't I had my room. Artur geologist. I had met him last January, and he has since passed away. He also said, I had mixed connective tissue. Damn state TV. Now that's a different diagnosis. That's a real diagnosis. I'm not saying to all the people out that have fi, bro. It's not enough of a term for me. It just says you have multiple aches and pains, and there's no You know, proof of underlying cause now if other doctors have had Variety of tests done, and they ruled out Lyme disease and there's no chance alive. Okay, so it's not lying. But there may be so many other things that are causing the multiple areas of aches and pains that I don't Use Fi, bro as a diagnostic term without caused by this, that or the other thing. I understand. So stay himself. There would still so therapy help Sybil when no health pulmonary fibrosis, which is to generation destruction of lung, so It helps liver kidney heart failure a variety of the general disorders and has Parkinson's Alzheimer stroke. So it may very well with what you're going through and get to know everything about what's happened with you. But He didn't mention the tree there had some kidney issue or I have the natural parents to Neil Fibrosis, and it did damage to my discourse issue to my kidneys. Because when you do stem cell therapy intravenously goes through your blood to all your organs, all your tissues. So Right. That may very well be an excellent mechanism of repair. I mean, it is an extra mechanism repair as it exists. It may be an extra mechanism repair for your Problems and think of it. As you get older. You're losing new cells all the time. So you're not making the new cells for a pair of your body like you did when you were younger. None of us are I understand that. Yeah, That's why I think it's such a brilliant idea. If I could just ask you one more thing. Caliphate. Um, I go to the parrot with the fi, bro. I have Paris stages. I don't know that I'm saying that correctly perceive worst. Have the itch in the virgin. The electric shock. The worst is the burning. I am going for a skin test destroying Tuesday. To see if it might be a small fiber. Paulina Recipes coming into your hands or your feet. My whole body. So have you had a memory of your neck to look at distant generation herniation your neck. No, I have not. You have to. That's the first thing you do when people have unusual neurological symptoms in their arms or legs in memory of your neck, and I'm arriving low back second test would be to do Nerve conduction test to see if the speed of the nerve conduction is normal from your neck down to your hands and your fingers because that would tell you if you have ridiculous petit, which is nerve root impingement or pressure, So yeah. Memory of your neck and your back low back are very important. Thank you so much for informing me. You know of this? Of course. You are wonderful host on your charlotte. She I was looking at morning. I was computing at night. I appreciate that. It means a great deal. Thank you. Thank you, Dr Katz TV abreast of what's happening. Tell me what's going on. When you get your test on. My most definitely will. Thank you for that. Everything balances I say OK, Have a wonderful day YouTube. Thank you by now. But okay 1 808 for eight W A B c 1 808 for 89222. Let's go to Billy. In Trenton. How are you? All right, Doc. You do a great job that I'm wondering like, I try come on the radio and pretend on the doctor because I noticed a lot of shows Don't sit up a little bit is a lot of shows with his people who are pretending to be conservatives on the radio. So why can't I just come on and be and we'll just see the beginning to show this guy is really not a doctor. I don't know. You could do that. Yeah, There's a lot. I mean, you pay people enough money to pretend they're conservative, But there's a joke. But the thing is bound time today. We put this out there does that of holiday like that with that unusually hurt people like if they don't have a Valentine? Well, somewhere that gets down to what you know, here's an important point. This is a great point to make. There are a lot of people out there. And especially when they've been stressed out for the entirety of this hole. Past year and they're stressed out from of right things. Whether.
"fibrosis" Discussed on WGBB Sports Talk New York
"Two thousand six. This past year was a big year for the foundation. Not only did you guys raise millions of dollars but the foundation also expanded. Its reach as well. Could you tell us a little bit about that. The number of things that we've done this year on first and foremost after hurricane katrina last year. We were able to adopt a number of Cystic fibrosis families in that region of the country and we help them secure housing. We made sure that they had their medicine. We made sure that they could get the cars to get around places you know..
Interview With Dr. Jason Fung
"Jason. Welcome back to the podcast. It's great to have you on paul. Thanks for having great to be here. We're gonna have a great discussion today. I really loved the new book. The cancer code. And i gotta admit when i dug into the book. It was really what i expected. I was thinking would be more along the lines of fasting. How that could help prevent maybe treat cancer given your background fasting but it was so much more than that. I mean that would have been a great book but this goes really deep into cancer and the evolution of our thinking of cancer over so many years so congrats. I really enjoyed this. Oh thank you very much. And i think that's sort of when i started looking at the issue of cancer. That was sort of how i got into it. Which is why you know most people. I would think think it's going to be about all about sort of fasting and nutrition and cancer but as done sort of deeper into the topic of cancer. There's just so much else going on because clearly cancer is a much more. Broad problem than just attrition because we know things like smoking for example has nothing to do with nutrition. What you eat if you smoke your risk of cancer just goes way way up saying with the best for example. You've exposed as fast as it doesn't really matter what you eat. You're you're great risk of developing a museum which is the type of lung cancer. So that's sort of while it was sort of how got into it as it developed as looking through it more became More and more the question which is never really answered. I think that is really important. Is the sort of how we think about what this problem really is. That is what is cancer. And that's i think one of the greatest remaining medical mysteries because most of these other diseases that we face we sort of know what's causing that. So even when we get a new virus like poof nineteen for example within a few months. We've got this virus like look you know it's still kicking our bod but we've sequenced. We figured it out. It's this is the virus. This is the sequence you know. The dna sequence. This is how it gets in. We've said okay it's the ace two receptors. You know you get at the site of storms. We know so much about it. Even within six months of this sort of brand new disease coming up which has greatest fascinating. Yeah something like hiv. For example it took us years to figure out the actual virus going from age hiv to sort of treatment whereas now you know thirty forty years down the line. We figured out what this virus looks like. We figured out know where detaches we figure so much. Stop so quickly but the problem is that with cancer. What is this disease. Such a strange disease because it's a common disease. It's the second biggest killer of americans yet. If you were to ask the question of what is this disease. People have no idea. Most experts have no idea like you ask the american cancer society and it says well. It's a disease of genetic mutations and that's not really correct because if it was simply a matter of genetics that is You know just bad luck genetically then. Why does environment play such a huge role in this genetic disease. That is if you have a disease. Such as cystic fibrosis sickle cell anemia. All these genetic diseases they passed on sort of mother to child or they have a significantly higher risk in we can identify the genes that are associated with it on the other hand. It doesn't matter if you're japanese if you're african if occasion If you smoke you're much more likely to get lung cancer. So it's not a genetic disease in that sense yet. People have been saying it's genetic disease donate disease and the problem with that. Is that if you don't understand what causes it. Your research sort of goes in the wrong direction that is looking for these genetic mutations and they progress in cancer has really slowed to a halt. Like if you think about how many genetic sort of tours for cancer we have. It's very very few the number of medications that makes a difference to cancer. You can count on one hand in most of those were developed in the early part of the sort of late nineties early two thousands rates with that was twenty years ago and whereas all these great genetic cures for cancer. We just don't see them in because it's not nearly a genetic disease and we have to sort of understand further and this is this is really an exploration of how the way we think about cancer has changed over the last little bit because there's been a huge paradigm shift from being a genetic disease tomorrow logical evolutionary disease which has huge implications for treatment.
Documenting Life with Cystic Fibrosis
"He looks back to another episode of this week and photo I'm your host Frederik van Johnson today we're traveling all the way to Dubai from California to talk with Katharina about some amazing work that she put together. We're going to dive in deep. We don't have a whole lot of time, but I want to dive in and get an idea of the project. She's put together that she's shooting or that she shot the the the driving force behind that and you can read all about this in the the companion article on the blogger for dot com. But I WANNA I WANNA dive into get a little bit get a little bit deeper and take different angles. So kathrina welcome to the show how are you doing? Thanks for having me. Is. Good to have you, it is really good to have you. You know you are right now sitting in Dubai I gotTa tell you. Dubai is on my list of cities that I absolutely have to go visit. I gotTA climb to the top of that the tallest building in the world. If I if they let me up there, I need to do that. So tell me about that I about yourself tells about Kevin and what makes what your driving force that that pushes you to create these amazing images that you create. So I'm Swedish born in Sweden I left when I was eleven. Had lived in Pakistan and Turkey and California, and and also in France and England and I ended up in Dubai when I was eighteen years old and I walked into a newspaper and then said. I'm really good photography should hire me and I only had a couple pieces. I don't again shooting for the high school use paper. And I think they just I don't know they just took a chance and I got a job with them and I started shooting. For this newspaper and was really interesting time I stayed for almost a year and then I start desisting for for four years almost. So that's Kinda where my training. Happen. Really. And I've been. Working in the commercial sphere in in the United Arab Emirates. Since Nineteen ninety-two I've been here who? How? Wow. Okay. So you're not a visitor, you're a resident. What's life like there? What's life like in Dubai for photographer? Me and I'm asking selfishly because one day. I'm going to go there. If I if I show up into by what, what do I have to expect? It's actually like a super vibrant community. It's very arty community. It wasn't I arrived I mean I was the only female photographer here and that obviously has changed in the last twenty eight years Now it's it's really amazing place to be. You're also in a can. I feel like we're in the middle of the world there because we are now four hours to Kenya, you're coming up hours to You know to Jordan Ghanistan four hours to you know SRI. Lanka and Maldives. So. Kind of you can hope on play. Well, not right now but you Name and and be anywhere. You know within four or five hours I love. That's how I worked in the whole region for for traveling and it's been you know Saudi and Bahrain and Qatar in all these places so I feel Very, much at home in this part of the world mnay. Back to Europe feel a little like I say, Hi to everyone people elect why she saying hi to us. It's more like. It's very friendly now. Wow, that's exciting. Yeah. That's city beds that whenever I see pictures like pictures of Dubai, are on my screen saver on my television. So you know whenever that comes up I'm just thinking that just looks like a city of the future. It looks like if you in this is kind of what he did. It looks like when you if you had a blank canvas and you said, you know what? I want to build an money's no object. Obviously. Build the best city that I can possibly build. This is the city that you would build as. I think very much like that is so modern in you know in. So many ways of of you know the way you conduct your daily life it's oil online and this kind of you can you can it's it's so accessible. I have to say that this morning when it's actually today is the day of. Summer and full rights Eckrodt's. Think. To, Dame, we've had an yesterday we've had fog and it happens when it changes weather from summer you know being really really hot. So every photographer in Dubai on instagram today and yesterday had pictures you know. Everyone makes up. Summer is over let's go out and shoot. Dubai. That's the thing you know photographers. If you you you. If you're in a place without studying places to photograph, it's kind of like torture right? Because you have got what was amazing geared software and others but I don't have anything to take photos of sounds like you. You have what you need to shoot and the locations to go shoe win when you're able to travel. So you're you're living. The dream. Super Hall tried. So it's you know the Celsius so it's it's kind of you don't go out during the day at old. Months. Yeah. Let's switch gears and talk about your work with the ski school in in how that came about and you give me give me a little bit of a background on that project. Right, so I do not philanthropic. Projects. Every. Year. Also parts of the applicable to refers. And, we tend to go to places but this one in particular I'm having because my my husband's boss is from Italy as she was advising the ski school of Cormier in Italy and the Ski Association of Korea. And this guy's premiere. On a brochure were making. She had a look at it and you know they were coming up with ideas and she's like I know this will talk she should come and do this. She doesn't know these projects. So I became involved in just in the year of two thousand and nineteen and we start talking about it. I got really excited because I love skiing and I felt I was heading. Over there to do this project on skis going up in the mountains, but it took so long for us to organize everything eventually on I flew in July of that year in two thousand and nineteen.
Never Be Royals
"It has been the habit of kings throughout the world to hire tasters to test their food on the off chance. Some oppressed masses poisoned it. But Henry, the eighth cast, a wider net with his paranoia. He wanted to be certain. No one was going to poison him transdermal either meaning through the skin. He ordered that every morning, the servant, the WHO changed the kings sheets had to kiss every part of the sheets, pillows and blankets they had touched to prove they hadn't smeared poison on them. They also had to test for poison on the cushion of his son. Edwards Chamber Pot. Though the historic record doesn't say how? My Name's Moxy and this is your brain on facts. The term mad king re entered the common lexicon a few years back. Thanks to George R. Martin's Song of ice and fire books. We'd have more than enough examples from Europe alone to choose from. George. The third born in Seventeen thirty eight was the English king who lost the American colonies. Though anti-monarchists would record stories of bizarre behavior like George Mistaking and trees for Frederick the Great? The king really did have mental health problems that manifested themselves in different periods of his life. During these times, he suffered from insomnia and talked incessant nonsense for hours. It was not uncommon for a single sentence to contain four hundred words. It has long been suspected that King George suffered from Porfirio. A genetic metabolic disorder that causes depression hallucinations, constipation, purple urine, and severe abdominal pain. However, as will come up frequently today new evidence in theories undermined that original thinking. One of the medicines that king was treated with was Gentian. This plant with its deep blue flowers is still used today as a mild tonic that may turn the urine blue. His incessant liquidity as it was called and his habit of talking until foam ran from his mouth are features that can be seen today in patients with extreme cases of mania from psychiatric illnesses such as bipolar disorder. Besides benign sounding herbal treatments, King George would be restrained in a chair with iron straps for hours. He was also bled forced to vomit and starved suffering under the humour old or four humors school, of medicine. A recent study based on the examination of King. George's hair shows high levels of arsenic administered to him as part of the cure, but would have served to only worsen his symptoms. In the last ten years of his life, his son and Heir George, the fourth served as regent. Fans of the show blackadder will remember George the fourth brilliantly portrayed by Hugh Laurie opposite the Tischler, Rowan Atkinson character. A somewhat annoying little side note when the play the madness of George the third was made into a film. In nineteen, ninety four, the title was changed to the madness of King George. Why for fear that American audiences would think it was a sequel and wouldn't go to see it because they hadn't seen the first two. When your business is running countries and even whole empires you WanNa keep that in the family and the best way to ensure that is to make sure everybody marries somebody there already related to. When you say it like that, it doesn't sound like such a good plan. But that was how royal houses conducted themselves for centuries to ensure they retained their fortunes in the days before even a basic understanding of genetics. When close relatives reproduce, it increases their offspring's chances of being affected by. Recessive traits for all kinds of physical and cognitive disabilities, including things like hemophilia and cystic fibrosis, as well as deformities like the Habsburg jaw. These incestuous pairings also run a greater risk of reduced fertility higher infant mortality, congenital birth defects, certain kinds of cancer suppressed immune systems, and overall smaller adult size. A condition referred to as pedigree collapse. Some royal families kept things closer-knit than others. Maria I of Portugal married her father's younger brother Pedro when she was twenty six and he was forty three. Their son and Heir Joseph married his aunt Maria Sister Benedetta. Therefore, Pedro's daughter-in-law sister
Instacart workers seek strike as jobs get busier, riskier
"Fairfield a group called County the gig South workers Carolina collective school superintendent is calling for a J. nationwide R. green says walkout fifty they percent want Instacart of students to there give workers don't protective have access gear to the and internet provide hazard at home pay so while Instacart schools are out responded he took the state saying it would up provide on an workers offer a to new provide hand sanitizer wifi capable upon request school buses and for will their make students changes to it its provides tip an system opportunity the for group all says students it's who too are working little in too a late virtual or E. some learning workers environment plan to strike but who others do not say have their internet content access at the moment in their homes with a paying job but to be able Instacart to access the internet also announced and that a makes month mom long extension Rosemary Kennedy of a temporary very happy policy some giving people fourteen can't days of paid afford leave it to workers and that's good who are thank diagnosed you know had with a lot the corona of fibrosis virus come round I'm I'm a Donahue showing out there
School Bus with wifi
"Fairfield County South Carolina school superintendent J. R. green says fifty percent of students there don't have access to the internet at home so while schools are out he took the state up on an offer to provide wifi capable school buses for their students it provides an opportunity for all students who are working in a virtual or E. learning environment who do not have internet access in their homes but to be able to access the internet and that makes mom Rosemary Kennedy very happy some people can't afford it and that's good thank you know had a lot of fibrosis come round I'm showing out there
An Interview with Jockey Daniel Centeno
"He's won nearly twenty nine hundred races here in the United States and nearly nine hundred more in his native Venezuela. Many of those wins have come Tampa Bay downs. Where Jockey Daniel? Centennial was in search of his seventh riding title even earned his first ride in a triple crown race. The preakness where we finished eleventh on it always mining all jockeys have obstacles to overcome. That's obviously the nature of the business. But one year ago Daniel Centennial had an even tougher burden to bear in January of two thousand. Nineteen centennial's longtime partner Ashley. George died after a nearly lifelong battle with cystic fibrosis roses. She left behind their daughter. Jasmine who's now in seventh grade. It's tough enough being a single dad and oh by the way Santana also has a twenty year old son son in college but it's pretty tough to work from home when you do what he does. So let's find out how he makes it all work as we welcome for the first time here to win the gate jockey. Daniel Centeno already. A handful of wins for you at the Tampa Bay. Meet a place where you've had quite a bit of success over the years more so than in Maryland where you ridden over the summer. What's been the key to your success in Tampa I dunno being here for light Fifteen sixteen years now for my first time and I I talk like it. I love the weather. I'm never been relieved. Grind with the cold weather. I never try to stay up on the winning thing and I did year by year. You know writing better courses that train and I got to my support here at the beginning from gaming as Kathy O'CONNELL and ride them for their like. WHO So? Maybe you know. Open a lot of a lot more awesome around the track and you know all my area that had been working for Greg to you split you. Year between Laurel Park in Maryland and Tampa. But now I know we're not going to see you what aqueduct in the winter based on what you just said but what made you choose those tracks supposed to say New York or California well because People that are right in for here in Tampa wants to go to Laurel Delaware and the year see bars. So that's like my shadow. God Nora Bill and it's pretty time so I'm really basically driving them. Everywhere are but We're doing good and a lot of oxygen around jockeys are said to have particular writing styles go for example Paco. Lopez takes horses away from the gate aggressively. Everybody knows that likes to go to the early lead. Pat Day was known as wait all day coming from behind. Nine Calvin Burrell is Calvin Bo Rail. You know where he's taking is horses. What do you consider to be your style? Well I I would say eighty two. I like to be more delay but You know it depends on what kind of house I've gone awry but I would like to be close to my thousand dollars outbreak throats to the Leo to pay Being the lead. But it's a defendant to pry. Sometimes you gotTa Jenny a little bit your style to fit all on the horses you know and then workout good too but I'm I feel more comfortable. Really close to the lay or something. That'd be proponent department of your nearly two thousand nine hundred career wins. You've won five grade three races in your career and a single grade to aboard ring weekend in the two thousand fourteen Tampa Bay Derby. You weren't a ride in the preakness as well in two thousand nineteen. What do those kinds of races mean to you? They they mean a lot for me. You know because I can help your mom. I Don t still down so I'd be doing building my curry of keying in this country like little by little step-by-step working hard right in the for different track The Great State for me the main a lot for me you know like I were so hot. And it's like a bay off for my work and I'm never give up and try you know especially luckier when I wrote a pregnant of like a drink of through. You know the the big horse and it would broaden your really good him. Kelly Rowland the ordinary. They give me the opportunity right. Trading is what so I drink too for me. Was it hard not to look around and just take in the atmosphere and instead focus on what you were doing. How hard list to do? Yeah well I come from Venezuela complete different compare here and then you really have to focus at work workout every day so you can get your business and you know doing your job and you know made me thanks you know and then try to cloud what every day. How hard was it making the adjustment from Venezuela coming here as a young man not sure of the language and not knowing what's at your prospects would be? What was that adjustment like well? There's a big chance you know especially with the with the language that you have to really talk to do every body and understand what they wanna tell you frighteners on there. When I was in Minnesota last dot doing English class and private I went to high school and in a private school so when I came back here I can't hear one time? Nineteen Ninety six. So I didn't really good because language I think more mar and then went back to Venezuela so I wanNA come back yet again and and do the same. That's what I do. Day lift classes private and Eleven when again by Two Thousand and three door. Hi You I was big little be I understand a little bit and then I got it your breakfast every day. You're talking every day so make as you Jackie Daniels. Centeno joins us here on the gate. It's been a year or so now. I belief since your partner Ashley George passed away from cystic fibrosis. What was it like losing her? And what's alive. You know US work together for the book thing and we went to a lot of work on every time Fago. What's getting worse and especially my daughter Yachtsman but I'm blessed my daughter's so throng which Banja La doing amazing and Making it every day you gotta be strong for my daughter and then their best for her. Now I believe when you have cystic fibrosis yes you have it almost your entire life so you must have known when you met her that she had this condition. Is that right. Yeah Yeah Yeah keep telling me from the beginning to doing doing okay. But in the meantime wanting her lungs would getting worse and worse than that was boring. They're are there only chantey how they would've transplant. And the medical cameras are not that both longtime plans doing quake and one day. Keep them back home for Halloween. And she that stroke and she was to call my mom to wake like Lamb and never for memory to talk in everything but no memory and keep going. I asked me and see what's in the two years and and doctors say to her body was rejecting everything again and then get get Her body stop working. Did you say she was in a hospital for two years. was that kind of in and out or was she in a hospital all the time time for two years to two years. Happy because you know she can be herself grandma what they get her. I was flying back and forth some time with me to see her but kick No recognize anybody know memories your longtime memories. The more you so I went to Work Yom okay and too much medication So it was really good time for my daughter and either adopt nine so oh my goodness now. It's one thing to being a dad but it's another thing when those kids are both teenagers because says many of our listeners know teen is four letter word I know I have a teenager and yours are on the opposite end of the teenage spectrums. Just when when you finish the teenage thing it all starts over again. How have you been able to manage all of that and your job well? And that's another the team did it. Don't nobody could All I think I'm blessed and my father and me to do everything so and then report report anything. I wasn't never pectin something like that but I was thinking
FDA approves 'breakthrough' drug for cystic fibrosis
"A breakthrough in a drug to help treat cystic fibrosis the federal drug administration approved a new treatment for the disease caused by a defect in a certain protein that causes a build up in mucus that affects the body it increases the risk for infections and leads to diabetes the drug is called try capped a and is approved for patients twelve years and older A. B. C.'s Michelle Franzen has more for people diagnosed with cystic fibrosis the rare disease has no cure just treatment now a new FDA approved drug called try CAFTA is bringing new promise ABC's chief medical correspondent Dr Jennifer Ashton says a target the defective protein that affects the body but there are some risks clinical trial showed improvement in lung function of about ten to thirteen percent some side effects increase in liver function flu and rash and the price tag for this drug three hundred and eleven thousand dollars a year it remains to be seen how much insurance and Medicaid will cover the drug's been approved for patients twelve years of age and older Michelle Franzen
FDA approves 'breakthrough' drug for cystic fibrosis
"New Hope for cystic fibrosis severs the FDA approving a new breakthrough therapy the drug can treat patients with the most common form of the disease which involves a gene mutation that causes a build up of mucous throughout the body ABC chief medical correspondent Dr Jennifer Ashton it's called try CAFTA it targets that defective protein and thought to be a possible option for ninety percent of people suffering with cystic fibrosis who were previously out of options it is approved for patients twelve years of age and older there's no cure for the disease which is rare but potentially life
Vertex prices cystic fibrosis combo treatment at $311,000-per-year
"Right hi let's take a look at New England business this morning this is been a long time coming yeah it's way ahead of schedule at the same time Boston drugmaker vertex pharmaceuticals gets an FDA okay to begin selling a treatment that will impact nearly all patients of cystic fibrosis this approval for the three drug cocktail called trade caffeic comes months earlier than expected the treatment attacks a genetic error in patients leading to the rare lung disease vertex of course is a worldwide leader in the treatment of cystic fibrosis it's already got three other drugs on the market making billions but treating just a minor percentage of patients this drug is also expected to become a so called
Trump administration seeks to deport children with life-threatening illnesses
"Also want to update tonight on a story that we covered pretty intensively intensively last week. This was a story i broken by w._v._u. Our public radio station in boston and by commonwealth magazine in massachusetts was also picked up thereafter by the boston globe and the miami herald then ultimately by the new york times but when this story first broke it massachusetts it was based on a couple of cases that centered around boston children's hospital boston children's hospital really elite children's hospital and it was almost as an unbelievable evil bit of news when this first started to emerge in the northeast last week there had been no announcement about this from the trump administration the only way anybody learned this trump administration plan was unfolding was when individual families started receiving letters from the trump administration that they had no warning of they couldn't believe them when they received them. They didn't know what to make of them. They started to turn to doctors and lawyers and advocacy groups to help for help with understanding what this could mean but the longest shortest the cartoonish lee evil caricatured bottom line of it as we the merged last week and as we reported here on the shell last week is that the trump administration had had somehow figured out a way to zero in on kids with life threatening illnesses kids with cancer kids with cystic fibrosis kids with rare diseases for which they they need specialized delicate advanced medical care of
Coal miners to urge Congress to protect their black lung benefits
"Week dozens of coal miners are on Capitol Hill today urging Congress to do more to help miners dealing with black lung disease Sydney bowls with member station W. M. M. T. reports coal companies pay a part time tax to support the blackland disability trust fund which pays benefits for more than twenty five thousand disabled miners and their dependents the tax rate fell by half in twenty eighteen and the fund is projected to be fifteen billion in debt by twenty fifty plus a surge in black lung cases means demand on the fund is likely to grow Terry Johnson is a retired minor from Kentucky I have progressive massive fibrosis complicated but and I'm going back Johnson says Alaska senator Majority Leader Mitch McConnell to restore the higher tax rate McConnell's office says he's agreed to speak with the visiting
Genetically Modified Viruses Help Save A Patient With A 'Superbug' Infection
"For the first time. Scientists have used genetically modified viruses to treat a patient fighting a life threatening superbug infection NPR health correspondent, rob Stein. Has the story is it bell. Cornell Holdaway was born with a lung disease called cystic fibrosis when she was fifteen a nasty infection started spreading through our body after she got a double lung transplant in London. Nothing could help her not antibody. Nothing. Her mom, JoAnn says the doctors told her there was no hope devastated to be told. You know, we could well be burying all child was just anyone has a child and never expects to have to bury them this this selves. But then is false doctors decided to try something out of the box therapies called Phages their natural enemies of bacteria. So the doctors found Graham hatful, he's an expert on phases at the university of Pittsburgh using genetic approaches with genome engineering were able to assemble this collection of three Phages that we could then combine tile to use the treatment, they know infect the kill efficiently. People have been treated with Phages before with mixed results. But no one had ever tried infusing genetically modified Phages into someone's body. It's kind of a scary thing to go in and administer treatment. Like this full, which we're completely on new ground. We don't know what to expect. Isabelle's doctor started infusing about a billion Phages into her body twice a day and held their breath. There's lots of things to worry about. And so the very first thing was, you know, does something does anything bad happen. But nothing did. In fact, Isabel started to recover she got stronger and stronger and Isabel who's now seventeen is living in almost completely normal life driving lessons. A school making fake city pool. God ning. No. Now, doctors aren't sure exactly how the Phages might have worked and is about is in cured. She still needs to get fade infusions every day. But the infection appears at least to be under control. I think it's amazing. It kind of shows there is completely. No limit. Until they can come up with really her. Mom, agrees them to be able to just have a little fiddle around with these Phages moins blowing valley when you think about it. Stephanie drafty studies Phages at the university of California San Diego. This is actually a historic moment. Fades therapy, seems to be the most promising alternative to anti-biotics that's on the scene. And this is the first time that genetically engineered fade has been used to successfully treat a superbug infection. Anna human being so strategy and hatfill hope this is just the beginning. What can we do for example to extend this to other types of diseases? The most obvious one is closest which is caused by a related bacterium, and that causes a lot of disease, and that's across the world each year and this very prevalent, drug resistant, strains that are very hard to treat. Now, this is just one case. And a lot more research is needed to see how well phases, including genetically engineered Phages really work, and if they're safe, but with superbugs on the rise and biotic losing their power. Researchers hope Phages could help save more
Phages, Graham Hatful And Rob Stein discussed on Fresh Air
"For the first time. Scientists have used genetically modified viruses to treat a patient fighting a life threatening superbug infection NPR health correspondent, rob Stein. Has the story is it bell. Cornell Holdaway was born with a lung disease called cystic fibrosis when she was fifteen a nasty infection started spreading through her body after she got a double lung transplant in London. Nothing could help her not anti-biotics. Nothing. Her mom, JoAnn says the doctors told her there was no hope devastated to be told. You know, we could well be burying all child was just anyone has a child and never expect to have to bury them United the selves. But then as doctors decided to try something out of the box thyroid is called Phages their natural enemies of bacteria. So the doctors found Graham hatful, he's an expert on phases at the university of Pittsburgh using genetic. Approaches with genome engineering were able to assemble this collection of three Phages
'Captain Marvel' soars with stellar 2nd weekend at US box office
"At the box office. So you're not from around here. It's hard to explain. Shining all other movies this weekend at the box office, captain marvel can then at number one starring Breen Varson and Samuel L. Jackson, total sixty nine million dollars. Number two. The new animated feature Winter Park at sixteen million the romantic comedy about a couple of with cystic fibrosis five feet. Apart comes in at number three with thirteen million. How to train your dragon the hidden world drops down to number four at nine million and another sequel from Tyler Perry and the family funeral drops down the number five with eight million
'Five Feet Apart' Review: Ailing Teenagers Live Dangerously for Love
"Now we're talking about movies. Tim's website is celluloiddreams dot net. So Tim what have you seen? I think there's one that reminds me of another movie that came out a few years ago at least in the description, it's called five feet apart. Isn't there something like that that had to do with these teenagers? Oh, the one about. Yeah. Piece distinguishes itself because well, first of all begins and ends with a speech spoken by one of the leads a teenager played by paley Richardson, who has cystic fibrosis, and it's a rather inaugural speech about the importance of touch. You know, how we as humans need it as much as the air, we breathe. So this is a story it's romantic drama about two teenagers who have cystic fibrosis. The other one is played by Cole sprouse. How'd you like to have a name Cole sprouse? I'm sorry. I didn't change that name probably not any way to teenagers with cystic fibrosis. They fall in love. And the tricky thing about people afflicted with this diseases. They can't touch each other for fear of some kind of potentially fatal bacterial infection that can be transferred from one to the other. Anyway, patients with this disease. They have to stay at least six feet away from each other and the title here five feet apart. I think. Is something that the two characters come up with it has a little risk factor involved because of another speech somewhere that one of them gets about a certain amount of or certain element of risk being necessary to look, and I really wanted to like this movie. I went in there expecting to because the distributors CBS films has been responsible for releasing some really good movies over the years. Like last year's it turned east gate and the first half hour is actually quite good. When the impossibly cute characters are introduced in the plot points of what I just talked about worst stylish in the narrative, and you learn about cystic fibrosis by watching this film. So it has that going for it. But the movie about half an hour into it it descends into this truckload of cliches repetitions on this team of I love you so much. I wish I could just touch you and literal hysterics about death and dying in survival guilt. So you know, when it didn't try it was kinda sweet and charming and the actors were all good. But when it tried it became borderline I rolling, and it was probably the least favorite of all the films. Yeah. I know the script was just it lack. I think it's strictly a movie for teenage girls, and maybe a teenage gay boys because our female protagonists would know it has a gay best friend. Fibrosis right is a good line in the film. Pat smoke is spoken twice. Did they say it's just life? It'll be over before you know, it, and that's kind of how I was feeling about the movie. It's just a movie it'll be over before you know, it. All right. Let's skip that one then that's five
What are the potential health benefits of gene editing?
"Last year. A Chinese scientists shocked the world by disclosing hit created the world's first gene, edited babies, and John Ahuja talks to Robin level badge a developmental biologist geneticist about the controversy and about the potential for easy to use gene editing, tools such as crisper Cas nine to revolutionize diagnostics, drug discovery and the treatment of disease. Everybody has become very familiar with the story of the gene edited babies that came out from China last year. So these were apparently, the world's first genetic babies created it really triggered a scandal. Do we know what's happened to the scientist and author the twin baby girls that have been born? We know nothing new particularly drunk you. Hey, all vote voters JK is currently in Shenzhen where here's university is. I think he's in a an apartment owned by the university and the stories in the Chinese press that the gods. What we don't know who those gods are whether the university outs police, whoever they are. We don't know whether he's under house arrest or whether he's free to move around. He actually emailed me and said, he's all. Fine. So the impression is I think he's trying to give me that he's not under arrest. So the goals may be that to protect him because I know he was receiving threats during the become fronts that we had last hole. I can say he's fine. About the welfare of the twin girls. Lulu a Nana be concern. We know nothing about that. Jake himself was very keen to stress that that privacy should be maintained that they should be protected and density, not known on. We'll this likewise their parents. There is an investigation being launched in China by the ministries of sciences on administrative health. They presumably will want to find out whether what he's claimed to have done is actually the case. And so they would need to take DNA samples from the two babies, and the parents, but I hope they do it in a sensitive way. These are just two little babies. They should be cheated just as that and not subject to anything bad at all. They have novel mutations in this, gene L five, which is known in some cases to confer protection, it mutations in that gene can confer protection against HIV. And that was the rationale behind the work. But Jake I did was to try and make these children immune if you like to HIV because having trophy in China of even being a member of a family where one of the family members house HIV as in this case, it's cheap very badly. Families the stigmatized the children wouldn't be allowed to play with other children simply because of that for example. So that also sized about another reason why the density needs to be protected because of that situation too. But we hope is that they will teach it to normal little girls. And that's it. They have mutations in the gene that novel mutations because of the way he did the dean of editing quite poorly. We have no idea what those mutations will do but all of us have mutations. Every new generation that forty two eighteen you mutations in genome. So just treat them like normal children. Keep a watching eye on them. See what happens say watch this space on the genus babies story. But of course, may scientists involved in genome editing, as you prefer to call it on not involved in trying to change the course of human evily Shen by creating these genetic mutations or changes that will then be passed on down the family line, as I understand it the real excitement for genome editing is in the lab working with adult patients, perhaps with single gene disorders also excitement with drug discovery and so on so let's talk about that. Because I know that you were involved as developmental biologist in the aren- decide of things does your work focused on the creek. We have a number protecting many projects, but let me decide about one of them jeans have to pulse to them. They have the part that encodes the protein is going to do its job for it. But it also has a part but controls when and where that gene is active so normal genes, right? Even all cells over time, they all cell type specific, and they can be. Stage of development specific they can be on the active of particular time in the embryo or any adult we've been using the genome editing methods to try and understand bisect light. This regulatory region for some jeans and one in particular, cold sulks nine so soaks nine is gene that has many roles in developing embryo, but one we'd been working on for a long time as its role in sex determination. So whether you become male-female soaks nine is really critical to give rise to the development of testes particular cell type was critical for making tested so mutations in soak nine can lead to sex reversal to give ex wife female development instead of male development. But it's a really complex gene is active in many different cells. And it turns out that it has an enormous regulatory region, which is really complex and we wanted to try and dissect that say you have specific sequences you can refer to enhance or sequences where other proteins transcription factors in Toronto. With those. To tell the gene to be active or silent. And so we had fun using variety of methods number of candidate regimes run home of for soaks nine in the process of making testes we had about thirty two different candidates. We started with and we use number methods to try and reduce that number down. We came down to four but looked like they were very promising, and we use genome editing methods to inactivate each of those in enhances and turn to basically delete each of those regions of DNA intern unfound one of them, which is located very long distance away from the protein, coding Potter, gene itself. Some six hundred fifty thousand base pairs away which is big distance. When we did he should that particular in Holzer it inactivates, the, gene. So we got X Y females. So even though you have this really complex regulatory region. Spread over many millions of base pairs and stuffed full of different regulatory regions. Turns out, but just one was essential for expression in the developing gonads said that they can rise to test. What's the next female? They are crumbs Emily mail voicemails scream saying about they've developed as a female in this case in the embryos. They are indistinguishable from normal females stabbed genotype female genitally. This is women. They have the mice. Not women they develop his females in humans, of course. Yes. You would also have cases where you have extra female development. So they look female, but chromosome Yuda male. They will be infertile because the germs house of the eggs in the next female that do very well, they get lost early on. So they will be infertile. But otherwise, they look and generally behave and all female month thing, I should ask you to do been is to explain very briefly. What's crispy cast Moines editing, as can you tell us how the crisper cast nine genome editing system works, very briefly, please, okay. It relies on making breaks in the DNA usually a double strand break in the day, and to do that you have an enzyme called cows nine, but you have to have a way of getting not enzyme to the right place in the genome. And that's the guide are a component. So the RA you design it part of the irony is designed to be complementary. So to match up with the DNA sequence that you want to cut the other part of the RA guide are on a has a sequence of interacts with the cows nine enzyme protein. So when you have both together, and you crisper is not linking crisper yours. Crisper is a shorthand term for the guide our nights for the irony. The name crisper comes from origin. Bacteria is not really relevant to. Use to the guy Rene takes the Cas nine enzyme to the right part of the genome. The enzyme an cups, the DNA and processes that occur in also to repair broken deny then jump in and try and repair it now in the simplest form of technology. You just making a break in the DNA actually, Germany making a mutation in a gene, you have a process called known homogeneous end joining horrible term, but it basically just tries to stick the broken ends DNA bound together again, but often you have a little mistake made and that can be sufficient to an activator, gene. This is incredibly useful in the lab for studying gene functions say rapid and easy. Now, if you want to make them more precise alteration in the genome sequence DNA sequence on that can be anything from a single letter up too, many many thousands of letters of code then you have to use a different DNA repair mechanism cold Hamasi directed repair. This requires a third. Component to be introduced to the time time, which we confined to his DNA template. So this has to pulse. Each end. You have a bit of DNA, but complementaries of that's the same as the gene in which you want to talk it. And then in the middle. You have a sequence that you want to replace the one that's in our ready with and if you have those three components together. Now, the cows names aren't the guide our day on the DNA template the direction repair mechanism will not work, and it will substitute. What was in old template into the gene it is quite an incredible technology in it? There's a third method which I wanted to tell you about which is really exciting, which is cold base editing. Now, this allows you to change one base pair one letter if you like in the code, but it works without making a double strand, cutting the DNA, it changes chemically if you like one letter to another then it's partner also then has to change. Change. Otherwise, you have a little loop in the DNA, and that relies on a different type of DNA repair maximum to do a little bit. But given that about half of single, gene disorders or calls. In fact, by single base pair changes mutations in the DNA, this new methods looks really promising because it doesn't come with the baggage that some of the other methods have of creating unwanted mutations. So you get just what you want. So it could well be about safer method at least when you're dealing with single based mutation. Tell me how genome editing is being used in the lab, and perhaps with patients, it's really exploded. In basic research. The use of genome entertain particular the crisp cows nine methodology, it's very easy to use. That's one reason relatively inexpensive to use. But it's just so powerful and it's a rapid. So we've had ways of altering genes in cells in coach. Uh-huh. Or in model animals that we use for research like mice methods to alter genes in many years for decades, but they will always very inefficient very slow to make a mouse carrying specific mutation in a particular, gene, it really used to take well over a year to do that we cannot do it in the motto of a couple of months. So it rapidly speeds up the way that we can do research to study the role of specific genes or pulse of genes during development in my case or for physiology over brain function, or in cancer, it's really speeded up things enormously and made it cheaper in terms of things like the possibility of using genome editing to treat patients who already have a genetic disease or council something like this again, that's really looking incredibly exciting. We've had some somebody, gene therapy. Also for decades, just explain what semitic therapies somatic cells are. Basically any sewn in the body apart from the jumps health germ cells being themselves who are going to give rise to sperm or eggs that would allow any genetic changed repulsed on to subsequent generations. So a typical somebody will be a skin owl muscle tell or bone cell brain zone. So there are whole ranger Nettie disease is that can compromise. The ability of particular cells to function or the politics function things that the blood'll sickle cell disease will be catalyse Mia, you have disease like cystic fibrosis or muscular dystrophy affect lungs muscles opticians, in many cases, these G two single mutations Chinga, gene. It's affected by small mutation affecting that, gene. So the genome editing methods can be used to correct, gene defects, or in some cases, find ways around of getting another gene to become active to replace the gene that's not working. There are now probably around twenty or so clinical trials that had been launched. Using the female amenity methods to try and treat individuals who have think disease of this soaks. I'm single, gene defects.