Post by Nadica (She/Her) on Jul 20, 2024 6:10:32 GMT
Vindication for patients as Long COVID is declared official medical condition - Published July 18, 2024
SAN ANTONIO – As COVID-19 swept through the world, it was hard not to notice some people having strange, long-lasting and unexplained symptoms after getting the virus.
KSAT 12 News in San Antonio has done a long list of stories on Long COVID, a serious illness someone gets from the virus that can result in chronic, long-term, debilitating conditions.
Patients all over the US went through hell trying to convince doctors and workplace managers that something was seriously wrong with them.
Now, the National Academy of Medicine finally accepted a paper defining Long COVID, making it clear that it is a physical health condition and allows for equitable treatment.
For patients like 16-year-old Taylor Presson, this is vindication.
Taylor began having bizarre new symptoms that showed up immediately after she got COVID-19 in 2022.
“The fatigue was really extreme. Joint issues. I could roll my ankles just by walking. I have ribs publications, so at any one point I can talk to you and have a rib pressing into my lung. I slept a lot, and I started to have a lot of full-body pain, to the point that when I went to physical therapy. I actually taped both of my ankles, both of my knees and wore ankle braces,” Taylor said.
Her doctors would not relate these issues to COVID-19, calling her debilitating joint issues growing pains.
“Sometimes it was amazement, and sometimes I actually had doctors argue back with me, saying the human body can’t do that because I can dislocate part of my foot,” she said.
Taylor’s mom, Amy Presson, had to advocate for her daughter.
“How do you tell a teenager that this is the life you’re going to live every day with all of this pain and fatigue? And I’m just like, ‘I’m not giving up,’” Amy said.
So they jumped from specialist to specialist.
“Trying to have your symptoms believed. I know she would come home and just cry,” Amy said.
However, those tears dried up when they met Dr. Monica Verduzco-Gutierrez from UT Health San Antonio, who listened to their story and diagnosed Taylor with Long COVID.
Gutierrez is a professor and chair of the Department of Physical Medicine and Rehabilitation at UT Health San Antonio. She runs the institution’s Long COVID clinic.
She is one of the world’s leading experts on Long COVID, which is why she was one of just 20 people who spent the last year and a half putting a paper together describing the illness.
More than 1,300 people contributed to the definition, and Gutierrez’s team put that all together.
“We got input from also stakeholders. We made sure that the patient’s voice was heard, and a caregiver’s voice was heard. Other agencies had to be heard in making this definition right,” Gutierrez said.
The National Academy of Medicine, directed by Health and Human Services, approved the paper, defining Long COVID and acknowledging it as an official condition.
“Finally, you’re no longer being told that’s not possible or you’re wrong,” Taylor said.
Gutierrez said it’s crucial to note that Long COVID can come from even the mildest versions of COVID-19.
“Some didn’t know they had COVID. Maybe they got sick and people around them had COVID. So, you can kind of just assume that they probably had it, and so these symptoms might be related to Long COVID,” she said.
Gutierrez knows first hand.
“Mine was literally like sniffles. It felt like allergies, and then I got Long COVID,” Gutierrez said.
Part of her passion is that she’s also a patient. Her main symptom has been severe fatigue.
“I could easily, before, go run a half marathon. Then I would go and run three miles and then not be able to run or anything for days and be very exhausted from that. The other thing was having palpitations or having heart rate changes. I also had really bad migraines and also was getting really bad hives and rashes,” Gutierrez said.
The paper she helped write lists over 200 symptoms that could be included in a Long COVID diagnosis.
The main symptoms include:
Autoimmune disorders like pots
Fatigue
Heart problems
Lung issues
Migraines
Diabetes
Asthma
Brain fog
Dementia onset
The condition’s designation is a huge deal for the medical community, considering it can be confusing to doctors when a patient has multiple, seemingly unrelated symptoms.
Gutierrez said all organs can be affected. The theory is that inflammation causes all issues in some way.
That’s where the next step comes in: training medical professionals to spot these symptoms and immediately refer them to a Long COVID specialist.
“So now how do we get it to the people at the front lines to primary care, for their clinicians to understand the definition. Hopefully, we start teaching about it more in medical schools and residencies,” Gutierrez said.
She said the hardest part will be speeding up the education and dissemination process, which can take years.
Less than a year ago, KSAT went along with Gutierrez to one of her Long COVID therapy sessions -- one that she also prescribes to her patients.
It’s called flow therapy, and it is typically used for heart patients.
It helps blood flow through the body from the legs all the way up, and it’s helped Gutierrez immensely.
It has helped give her more energy, which means she can work on the paper and see her patients.
The therapy Taylor Presson called a Godsend is constant physical therapy.
“I haven’t taped my knees in probably over six months. I haven’t worn ankle braces in about a year,” she said.
Seeing her now, you’d never know she has Long COVID.
This girl is the busiest teenager we’ve ever met.
“A usual day, I wake up at about 5 a.m. because I have to be at school at 6 a.m. to be an athletic trainer because we just finished with spring football right before school ended. Then I have my usual school day, which includes doing two college courses. Then, after school, l become Pep officer, where this coming year I’m going to help lead a team of over 100 ladies,” Taylor said.
The problem with therapy is that it costs money, and for years, most Long COVID therapies haven’t been covered by insurance.
Many debilitated patients also have had issues getting on disability.
Gutierrez and Pressons hope that now changes with this official medical recognition.
“There was a report also made to the Social Security Administration to say, ‘OK, these are the 200-plus symptoms. They can be debilitating in adults and children,’” Gutierrez said.
When more of these diagnoses are finally made, there will need to be more places for patients to go.
There are only about 40 Long COVID clinics in the U.S.
“That’s not even one per state,” Gutierrez said. “There needs to be more.”
Luckily, Gutierrez runs one at UT Health San Antonio, but the waitlist is not short.
Years ago, when KSAT started interviewing local Long COVID patients, they were waiting up to six months.
Now, thankfully, it’s dropped to about two months.
Gutierrez said UT Health now also has a grant to make their clinic a one-stop-shop.
“Meaning like when you come to see me, that also there might be a physical therapist that’s there, or there might be the pulmonologist that’s there if you need that. So there isn’t so much wait time to get to the next specialist that they need to see,” Gutierrez said.
Meanwhile, the other solution Gutierrez needs to see is more research on Long COVID.
She and her colleagues want to figure out, for example, if people with certain genes are more at risk.
Amy’s husband (Taylor’s dad) also has Long COVID, but sadly has not responded to any treatments.
“His symptoms, dizziness, fatigue. He had lots of falls, had to start using mobility devices, cane, walker, a standard wheelchair. And just recently, she ordered him a custom wheelchair because he can’t even sit upright and hold his neck up. He has such extreme muscle weakness that he has to be fully reclined,” Amy said.
So, while the whole Presson family continues to fight, Taylor wants the world to know, “It really can happen to anybody of any age.”
“It doesn’t matter if you’re young or old, healthy or not, woman or man,” Gutierrez said.
If you’re having trouble getting a diagnosis on some seemingly random symptoms, tell your doctor about Long COVID, get some tests run, and see a specialist.
You can call UT Health’s Long COVID clinic at 210-450-6470 or head to their website.
SAN ANTONIO – As COVID-19 swept through the world, it was hard not to notice some people having strange, long-lasting and unexplained symptoms after getting the virus.
KSAT 12 News in San Antonio has done a long list of stories on Long COVID, a serious illness someone gets from the virus that can result in chronic, long-term, debilitating conditions.
Patients all over the US went through hell trying to convince doctors and workplace managers that something was seriously wrong with them.
Now, the National Academy of Medicine finally accepted a paper defining Long COVID, making it clear that it is a physical health condition and allows for equitable treatment.
For patients like 16-year-old Taylor Presson, this is vindication.
Taylor began having bizarre new symptoms that showed up immediately after she got COVID-19 in 2022.
“The fatigue was really extreme. Joint issues. I could roll my ankles just by walking. I have ribs publications, so at any one point I can talk to you and have a rib pressing into my lung. I slept a lot, and I started to have a lot of full-body pain, to the point that when I went to physical therapy. I actually taped both of my ankles, both of my knees and wore ankle braces,” Taylor said.
Her doctors would not relate these issues to COVID-19, calling her debilitating joint issues growing pains.
“Sometimes it was amazement, and sometimes I actually had doctors argue back with me, saying the human body can’t do that because I can dislocate part of my foot,” she said.
Taylor’s mom, Amy Presson, had to advocate for her daughter.
“How do you tell a teenager that this is the life you’re going to live every day with all of this pain and fatigue? And I’m just like, ‘I’m not giving up,’” Amy said.
So they jumped from specialist to specialist.
“Trying to have your symptoms believed. I know she would come home and just cry,” Amy said.
However, those tears dried up when they met Dr. Monica Verduzco-Gutierrez from UT Health San Antonio, who listened to their story and diagnosed Taylor with Long COVID.
Gutierrez is a professor and chair of the Department of Physical Medicine and Rehabilitation at UT Health San Antonio. She runs the institution’s Long COVID clinic.
She is one of the world’s leading experts on Long COVID, which is why she was one of just 20 people who spent the last year and a half putting a paper together describing the illness.
More than 1,300 people contributed to the definition, and Gutierrez’s team put that all together.
“We got input from also stakeholders. We made sure that the patient’s voice was heard, and a caregiver’s voice was heard. Other agencies had to be heard in making this definition right,” Gutierrez said.
The National Academy of Medicine, directed by Health and Human Services, approved the paper, defining Long COVID and acknowledging it as an official condition.
“Finally, you’re no longer being told that’s not possible or you’re wrong,” Taylor said.
Gutierrez said it’s crucial to note that Long COVID can come from even the mildest versions of COVID-19.
“Some didn’t know they had COVID. Maybe they got sick and people around them had COVID. So, you can kind of just assume that they probably had it, and so these symptoms might be related to Long COVID,” she said.
Gutierrez knows first hand.
“Mine was literally like sniffles. It felt like allergies, and then I got Long COVID,” Gutierrez said.
Part of her passion is that she’s also a patient. Her main symptom has been severe fatigue.
“I could easily, before, go run a half marathon. Then I would go and run three miles and then not be able to run or anything for days and be very exhausted from that. The other thing was having palpitations or having heart rate changes. I also had really bad migraines and also was getting really bad hives and rashes,” Gutierrez said.
The paper she helped write lists over 200 symptoms that could be included in a Long COVID diagnosis.
The main symptoms include:
Autoimmune disorders like pots
Fatigue
Heart problems
Lung issues
Migraines
Diabetes
Asthma
Brain fog
Dementia onset
The condition’s designation is a huge deal for the medical community, considering it can be confusing to doctors when a patient has multiple, seemingly unrelated symptoms.
Gutierrez said all organs can be affected. The theory is that inflammation causes all issues in some way.
That’s where the next step comes in: training medical professionals to spot these symptoms and immediately refer them to a Long COVID specialist.
“So now how do we get it to the people at the front lines to primary care, for their clinicians to understand the definition. Hopefully, we start teaching about it more in medical schools and residencies,” Gutierrez said.
She said the hardest part will be speeding up the education and dissemination process, which can take years.
Less than a year ago, KSAT went along with Gutierrez to one of her Long COVID therapy sessions -- one that she also prescribes to her patients.
It’s called flow therapy, and it is typically used for heart patients.
It helps blood flow through the body from the legs all the way up, and it’s helped Gutierrez immensely.
It has helped give her more energy, which means she can work on the paper and see her patients.
The therapy Taylor Presson called a Godsend is constant physical therapy.
“I haven’t taped my knees in probably over six months. I haven’t worn ankle braces in about a year,” she said.
Seeing her now, you’d never know she has Long COVID.
This girl is the busiest teenager we’ve ever met.
“A usual day, I wake up at about 5 a.m. because I have to be at school at 6 a.m. to be an athletic trainer because we just finished with spring football right before school ended. Then I have my usual school day, which includes doing two college courses. Then, after school, l become Pep officer, where this coming year I’m going to help lead a team of over 100 ladies,” Taylor said.
The problem with therapy is that it costs money, and for years, most Long COVID therapies haven’t been covered by insurance.
Many debilitated patients also have had issues getting on disability.
Gutierrez and Pressons hope that now changes with this official medical recognition.
“There was a report also made to the Social Security Administration to say, ‘OK, these are the 200-plus symptoms. They can be debilitating in adults and children,’” Gutierrez said.
When more of these diagnoses are finally made, there will need to be more places for patients to go.
There are only about 40 Long COVID clinics in the U.S.
“That’s not even one per state,” Gutierrez said. “There needs to be more.”
Luckily, Gutierrez runs one at UT Health San Antonio, but the waitlist is not short.
Years ago, when KSAT started interviewing local Long COVID patients, they were waiting up to six months.
Now, thankfully, it’s dropped to about two months.
Gutierrez said UT Health now also has a grant to make their clinic a one-stop-shop.
“Meaning like when you come to see me, that also there might be a physical therapist that’s there, or there might be the pulmonologist that’s there if you need that. So there isn’t so much wait time to get to the next specialist that they need to see,” Gutierrez said.
Meanwhile, the other solution Gutierrez needs to see is more research on Long COVID.
She and her colleagues want to figure out, for example, if people with certain genes are more at risk.
Amy’s husband (Taylor’s dad) also has Long COVID, but sadly has not responded to any treatments.
“His symptoms, dizziness, fatigue. He had lots of falls, had to start using mobility devices, cane, walker, a standard wheelchair. And just recently, she ordered him a custom wheelchair because he can’t even sit upright and hold his neck up. He has such extreme muscle weakness that he has to be fully reclined,” Amy said.
So, while the whole Presson family continues to fight, Taylor wants the world to know, “It really can happen to anybody of any age.”
“It doesn’t matter if you’re young or old, healthy or not, woman or man,” Gutierrez said.
If you’re having trouble getting a diagnosis on some seemingly random symptoms, tell your doctor about Long COVID, get some tests run, and see a specialist.
You can call UT Health’s Long COVID clinic at 210-450-6470 or head to their website.