Shamir, Severe Disease, Hana Axelrod discussed on Skimm This
Of the show you heard from ana and shamir to women who are suffering from. What's known as long cove. Ed if that sounds like a really broad and kind of generic name for a health condition. You're not wrong. This is intentionally broad definition. It can encompass someone who was in the hospital with severe disease who has long lasting scarring or damage to the heart lungs or other vital systems but in the past year we've seen emerging more and more just how many people who had mild or moderate code nineteen so people who initially didn't have to go the hospital or needs to be supportive with oxygen or targeted treatments but had this failure to recover characterized by Ups that's dr. Hana axelrod an infectious disease physician at george washington university. Last year she cofounded. Gw's cova nineteen recovery clinic to care for people suffering with long cove it. She told us. Some of the clusters of long cove and symptoms include things like shortness of breath difficulty. Catching your breath. We're getting back to endurance with exercise irregular or uncontrolled straight neurologic symptoms such as nerve pain headaches or migraines profound fatigue cognitive issues such as memory. The tensions have problems. We've also seen a lot of sleep. Disturbances we've seen some people with long lasting temperature the strangulations people who feel hot or cold or may actually run look. Great fevers for a long time after initial infection. Some studies have estimated that more than one in ten people who contract cova nineteen have reported suffering from long. Kobe and researchers have noted. This seems to affect more women than men in the arts that the average age of a patient has been in their forties. Maybe thirties and we have seen three to one. Female male ratio. We don't know if that is because females are more affected more because women are more likely to seek care regardless of the explanation for that with the delta variant now causing huge spikes in case numbers and hospitalizations. The medical community is facing increasing pressure. To figure out what exactly is going on with long it. Unfortunately there's still a lot of bad news here like were around eighteen months into this pandemic and researchers still don't have a strong idea of what causes long cove it in the first place so far there are a few working theories so one of the strongest hypotheses out the gate was that the extreme inflammatory reaction ovid nineteen can provoke. Even in healthy people can trigger other immune damage overproduction of antibodies. Think of this like antibodies. That essentially misfire or go into overdrive and attack other tissues in the body not the virus. They should be targeting. If that's what's going on here it would make long. Cove it in autoimmune disease overtime dr axelrod says another working theory has emerged. Loan cova for maybe half the patients navy. More appears involves the nervous system. She's not sure what's causing this saying. It could either be cova. Nineteen directly attaching to attacking nerve cells or the body's immune response causing the damage. Either way damage is being done and it's causing ongoing neurological symptoms like brain fog headache or the loss of smell. Proving either of these hypotheses or another one is going to be difficult especially because of just how many symptoms have been reported one. Study of just a few thousand people dealing with long cove found. They were suffering for more than two hundred different symptoms. And these symptoms aren't just different for a lot of people they could also be really severe requiring a total change in how some people live their lives. Here's anna the musician from queens. You heard from earlier. I feel like in some ways. I haven't changed as a person. But i also feel like every single thing has changed. Everything's changed its overwhelming. I think a lot of my able bodied friends. say big. what have you been up to and a lot of times. I say nothing. But then i remember like actually. I've been learning this whole new way of flesh play. Just don't jumped in a a whole new way of living and trying to just learn as much as i can about that while i'm super tired. Another thing tiring people out dealing with long cova is feeling disregarded by doctors. Here's shamir who you also heard from earlier. She told us she's constantly felt like she's had to be her own doctor because her actual doctors weren't listening to her. I wasn't treated fairly. I wasn't treated with compassionate. Care wasn't listened to. I wasn't hurt and i was dismissed and on top of that. She says her experience was likely made worse because of existing discrimination in the healthcare system. Those first eight months. I experienced sexism. Racism from doctors in even just a basic headache wasn't listened to or wasn't validated by doctors. I never thought. I would have that experience but as soon as i started so watch myself from march until probably about october of last year. I said wow. I had been tossed aside dismissed by doctors just because there is this overarching assumption. That black people black women don't know they're buddies. Doctors assumed time. After time that i did not know what i was talking about when i say that these are the symptoms of cove. It okay so those are the many challenges that people with long cove at face but both shamir and anna have taken specific steps to try to make living with long it easier. Shamir has become an advocate for herself and for others is important for a person who is dealing with long long-coveted to contain you. Don't stop advocating for themselves. Keep copious notes of the treatment and the care that they're getting from doctors. Don't be afraid to ask questions. Write the questions down right. Symptoms down while anna has found new groups to go to for validation and support leaning on others in the long cova community and the disabled community for help. It's been a lot of learning about how people live who are comically ill and feel so grateful for them. Saying you know that you don't have to reinvent from scratch how to live as a sick person and they're like ooh you could try this or like this is easier than this. Or here's some tips about how you could eat. That takes less energy. Like here's some easy to prep meals. Which brings us to our good news. Kinda dr axelrod says compared to several months ago there are now more treatments available to alleviate certain long cove symptoms. We know more about medical treatment. The use of nerve medication seems to be quite promising in alleviating the symptoms and allowing people to recover and to regain control. According to scientific american other treatments that seemed to work for some people include taking stimulants like adderall. Or ritalin concentration issues. Those same researchers also have observed that some asthma treatments and breathing exercises can help people who feel short of breath. More money is also being invested into studying long cova including from the national institutes of health. Which says it's allocating over a billion dollars towards more research. Dr axelrod admits that help is needed. It's been difficult to get long. Cova patients the care. They need the state of our healthcare system. Right now. we're hearing every day. How overstretched overburdened. Even acute care is across. The nation were in.