Jerry Greenberg, Derek, Mindy discussed on Steve Cochran


Davis, so friendly. Now, let me choose some folks here in studio, as we continue starting with Nordea whilst my notes, I'm no good. Starting Jerry Greenberg from the TSE alliance of Chicago a chair and grandmother of Sofia, high Sophea and Derek. What up did Derek, remember you, buddy? You look great. Thanks. Good talk. All right. Good. And Mindy is here as well. Mindy also was with let me Jerry, what does TSE to briskly roses complex is a rare disease genetic disorder, and you get benign tumors throughout the body on your skin, your brain, your lungs kidney, and it's a strong genetic link to autism and epilepsy. So many people who have TSE also have epilepsy and not as them. And the last thing I'll say about that is it is also connected to other diseases. So research also impacts diabetes cancer because of the growth. So it's a very complicated reaching. It is far-reaching good word and Mindy live with us do. When were you diagnosed I was diagnosed when I was six months old, those headphones too loud. You look like you're scaring yourself. Take them off of their body. You don't even need him. All right. So you are held, I'm sorry. I was six months old when I was diagnosed tended today know what they know now did not okay back. They didn't even know what Jean caused SC, they just knew by symptom. So this just purely symptomatic that they knew that I had TSE impacted your life. You know what? It's, it's definitely maybe who I am today. I will tell you that it has. It's had its ups and downs security for me. I'm not I am. We'll say I'm not as severely affected when it comes to certain things that is complex about this disease, but it has affected me. Effected me as a child with the seizures, whereas I always had seizures, and for while they were they were controlled by medicine. But then, as I got older, they were consistency Hafid far more frequently the seizure for more prevalent, a medicine was less effective. Exactly. And then it gets basically when twenty one medicine chide others that have followed it. They all pretty much are gonna free act. The same way off, right? The body lay certain meds and becomes used to that exactly immune to try something else. Pharmacologic crapshoot level, right? It's just fantastic. I appreciate good day. You know it is a good day. Really? Always say now I do have more good days than bad days, just because my the treatment that I'm currently on to target my kidneys, which I have NGO my plumas of the kidneys, which is part of the condition of TSE, and it keeps them from growing, and it keeps them stable and hopefully over time it will also help to shrink them and Finchley, they'll dissipate and Jerry, when we hear a discussion of benign in a sentence, we think. Well, that's good news. But if there's a tremendous amount of these, they can do, great damage, right? Absolutely. But benign means not malignant. Yeah. They can it depends how where they are in how they grow like, Derek actually has tubers the gross in his brain, but they're not growing and they Monnet. That's why people TSA are constantly monitored xrays. All right. To the microphone get your face right in your high, buddy. Good your hold. Oh nine. So what were you like eight when I say? Yeah. About a year. I'm pretty good at math. Don't you think? Yeah, pretty impressive. What's night, third grit yet? And, or are you going to be in going into fourth grade? Is that the deal, I'm going to fourth grade yet? What do you want to be when you grow baseball player position? I base first base zone you play now. No. We're in AAA, we rotate. I'll tell you what they recall, the White Sox right now. I don't know if you're white sector cubs guy, but we may call you up today. He's ready to go. I think so. I think so. And so you're the big SIS. Lina that might kill and how old are you? Eleven years old. I bet you're good big SIS. Moms giving me a thumbs up from back there. How about you, what do you want to be when you grow up? I know that answer. Okay. Oh, really? In the movie business. What's your favorite movie of all time, the girl, greatest shown great? You know, I know Hugh Jackman a little bit. Yeah. I'm gonna tell them you said, hi. But it's nice to meet all you guys. So let me get back to you for a second mini where does this go from here? We got to walk coming up trying to raise it much research, die, many research dollars as possible. But if somebody deals with this every day, what are you looking for looking for people to bring more awareness to the condition because even though there's other conditions out there, that, that people know more about such as a OS TSE is actually more common in people than AOL less at saw, not as well known. So the idea out there to get people to come out in to take part in the educated on this particular complex conditions. So we're able to reach out and find cures for TSE because, you know, when you leave TSE is a Lynch pin disease, Lynch pin, meaning that when you do studies and research to try and find a cure for this condition, you are actually contribute. To finding cures for other conditions. That's a great point. So, and so that is domino falls over. And so we just want really people to take take that into consideration to come out to be educated to really any know what it's about a community about people coming together joining together unifying for great. 'cause that eventually will help with other conditions out there. You make a great point thought about it. But with all the various ways Jerry, this touches people, you could find cures for things while you're on the way to figure this out. Absolutely. And I think Mendis point is so well taken that people need to come to the Zoloft, and people want to help and they don't know what they can do so that things they can do is come to the walk donate spread awareness. If every person today, that was listening to you. Steve Wigzell, one other person that they learned about a new disease. Impediment till ten. Yeah. I think. Yeah. Ten be better events, going to take place rain or shine a Colonel high school, one o'clock, karma Parkway Monday line. And that is again, one week from Saturday on the twenty second you're going to be in a look. Doing the lock overnight. But normally I bet you're pretty good big set. Not that you're not a big good can keep an eye on a little brother help take care of them. Good for you. Lies air Derek? You'll be walk. Yes, I will. I've a sense that you'll run part of the walk is that what's going to happen? You get a little bored. Just take off running. Yeah. Good. I normally do so you do. Yeah. Guess I'm guessing. You got a great family. And I know it's not fun to deal with what you're dealing with. But you look great buddy. You really do. Thanks, Trump's, like you have a pretty good time baseball. I am cubs. White sex. Cub. Yeah. Okay. Well, we may need socks. I who's your favorite come. It was Jake area but it's Darvish now Darvish your pitcher. How about you many? Yeah. You pick your favorite Cup. All right website. You want to go to the lions dot org. And when you are there after you look around and learn what you need to learn. You can also click on step forward or I think it says, find a walk and our walk is in Monday line on June twenty second, and I'd like to thank you, Steve for this opportunity. Of course, spread awareness. Heavy to do it. And it doesn't just have to be once a year, so things come up. Please let me know. Yeah. Well, there you go. And tomorrow, you never know about these things been. In the meantime, I think your point mini about L S is really important, too, because every disease, unfortunately, needs a publicist and the Morgan talk about this condition the better. Exactly. And you know, there's so much out there nowadays that we could do, just in technology in the health industry that money costs money. But, you know, when we when we all come together. I will say knowledge is a powerful thing. It end. The more we make it known. TSE known. The more were able to get more people involved in, you know what the more people will want to be involved in the more that will be able to contribute to find a cure in contribute not to send a financial way. But also in a way, where energy energy, positive, energy, sir. Step forward to cure the.

Coming up next