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Hundreds of thousands of Americans fighting long-haul symptoms from COVID-19 | ABCNL

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Dr. David Putrino from Mount Sinai Health System and COVID long-hauler Joel Fram discuss the long-term effects of the disease.

Two years since covet 19 was first reported in the u.s now with one million lives lost nationwide scientists and health officials are still learning about its long-term effects on the many more who’ve survived hundreds of thousands of americans are so-called coveted long-haulers some battling crippling symptoms well after their diagnosis broadway conductor joel

Fram is one of those long-haulers you might remember we spoke to joel last month about the support that he was getting to help with his symptoms and joel and dr david petrino the director of the rehabilitation innovation for mount sinai health system are both joining me live now to talk more about this and dr petrina i want to start with you your team has treated

Thousands of long-haul coveted patients um what has your experience been and what do you think is unusual about how this has all unfolded from when you started until now yeah i i mean i think that the biggest challenge here has been that we have an entirely new chronic condition that is causing severe disability in actually millions of americans and tens of

Millions of people worldwide and there’s been so little of a response initially to allow people who are struggling with these symptoms to access adequate care and we need to move fast to improve that now according to the journal of the american medical association 10 to 30 percent of americans who get covid experience these kind of long-term symptoms so can you

Just briefly explain what long-term covet is and what some of the more common symptoms are yeah absolutely we we think about long covert as something that we would call an infection-associated chronic illness so we don’t quite understand the underlying cause that is is causing all of these long-term symptoms but it leaves individuals uh who had an acute covert

Event with extreme persistent fatigue something we call post-exertional malaise which is a worsening of symptoms after exertion cognitive impairments heart issues lung issues and also a number of other very personalized symptoms at last count we were tracking over 200 symptoms affecting 10 different organ systems and i know these effects can get pretty serious

Debilitating and joel i want to go to you on that when did you realize that you were experiencing these symptoms post covid and what were they so i came down with covid in march of 2020 and it took about three weeks for me to get over that initial bout of kovid and then for about a month i actually felt like i was getting better i was doing yoga i was doing

An aerobic exercise plan but i remember it was a 28-day exercise plan and on day 26 all of a sudden it was like someone flipped a switch my body just could not get through the first five minutes of the aerobic exercise and i remember having to just lay my head down on my kitchen table the fatigue was crushing so for me in the next couple months the fatigue was

Really bad i developed ocular migraine in my left eye my joints would swell up and i would also get breathless doing very normal things like walking up the stairs you know from the subway so it was really scary because i thought i was done with covid and i realized fairly quickly that these symptoms were persistent and not only were they persistent but they were

Really interfering with my day-to-day activities i know it’s been a very long journey for you to get to where you are now one how long did it take to connect the dots that this was uh long covered that was affecting you and what was the process of rehabilitation like well in many ways i am very very fortunate my father was a doctor my sister is a cardiologist so

I actually had access to medical knowledge also i am pretty strong in terms of patient self-advocacy so i was doing the research myself um but i would say by the summer by june i was convinced that yes this was long coveted and i remember i actually heard about the mount sinai long haul clinic and so i called them and they were unbelievably nice and they said

Listen this is exactly why we’re here but the next appointment isn’t for six months so i really had six months of waiting in order to be seen and this is of course because we were in the middle of you know one of the big surges in the pandemic and a lot of people were suddenly experiencing long covet as well so they were probably quite overwhelmed but it was a

Scary six months because i was getting worse and worse and when i was at the clinic i was very fortunate to see many specialists but and i’m sure you’ve heard this story before all of my tests were coming back negative my heart was fine my lungs were fine my kidneys were fine my brain was fine which in one way is good news but it also doesn’t explain why you’re

Going through the symptoms you are and it can be very very frustrating and so i was feeling at a dead end and i think the one thing that people don’t talk about enough in long covet is the mental health issues that arise when you’re facing what could be a chronic disease with really no known cure so i would say that finding dr petrino’s clinic where there was

Definitely a protocol for aerobic rehabilitation was the start of my getting better dan how difficult that would be when you’re searching for answers and you just can’t find them dr petrino why do some symptoms eventually improve for some kovid long-haulers and not others and how do vaccines factor into all of this yeah it’s a great question um so you know i’m

So proud and happy that we were able to help joel and we’ve been able to help hundreds of patients that are similar to joel i i think we need to understand that long covert is very likely many different conditions so we have had many patients who respond to rehabilitation in the way that joel has and we have many other patients who require a much more gentle and

Considered approach in in the rehabilitation process um and so really the big thing that we’re struggling with right now is a lack of an understanding of the underlying cause of long covert and that’s where we need a lot of research efforts right now so how do vaccines factor in does that improve someone’s care what do long coverage have to consider on that front

And what happens if someone like joel gets covered again yeah these are all great questions um right now as we’re we’re trying to study uh the effects of the vaccine on long covered there doesn’t appear to be a solid understanding of whether or not vaccines will prevent individuals from getting long-covered there’s two variables at play the first is the sort the

Variant of covert that you get initially and then the other variable is how many times you’ve been vaccinated so right now we’re seeing long covered rates generally drop off but we’re not sure if it’s because of the vaccination or because of the variant type so these are things we need to understand better but very glad to hear that you are seeing that tapering

Off yes we’re very we’re we’re really relieved about that but i still need to stress we’re talking about you know still five to ten percent of people getting long covered after an acute infection which when we look at the numbers in the united states that is enormous yes still a lot of people all right dr david petrino joel thank you both uh and joel it’s i know

You’re not a hundred percent yet but great to see you doing so well congrats on the tony nominations and excited to see you in action on broadway in the company thank you hi everyone george stephanopoulos here thanks for checking out the abc news youtube channel if you’d like to get more videos show highlights and watch live event coverage click on the right over

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Hundreds of thousands of Americans fighting long-haul symptoms from COVID-19 | ABCNL By ABC News