Semhar Fisseha has been diagnosed with COVID and doing a few simple tasks can be draining.
There is a person named Helena Kubicka de Bragana.
Semhar Fisseha was a healthy, active 39-year-old before she became sick with a coronaviruses.
She took walks every day and planned vacations with her daughter. Many activities that people take for granted can be costly.
She says in the audio diary that she woke up with a deep fatigue.
I washed the dishes, went for a walk, and showered yesterday.
Fisseha has chest pain and a racing heart.
In an audio diary, she says her heart rate has been up and down. It has gone up to 120s, 130s without any activity.
Fisseha is an administrator at Cornell Medicine. On some days, she wakes up feeling like she will be able to take a lot off her to-do list: shower, work a full day, prepare lunch and dinner for her daughter.
She can become drained just from talking and have to rethink her plans.
One of the most common long-term effects of COVID-19 is the deep fatigue Fisseha experiences. It's known as "post-exertional malaise," a worsening of symptoms such as pain or fatigue after physical or mental exertion.
Semhar Fisseha has had to become more careful about how she spends her time.
Semhar Fisseha.
She said that she was active and social before she was homebound and had to calculate the energy she had for just the basics.
The National Institutes of Health refers to these long-term effects as "post-acute sequelae of sars-coV-2 infections".
A study found more than 200 symptoms associated with long COVID00299-6/fulltext, many of which affect multiple organs or systems within the body. Some patients have issues with their nervous system, which is responsible for breathing, digestion and blood pressure. Mast cell activation syndrome is a condition that increases the risk of anaphylaxis. Many people report trouble with their memory and concentration.
A crack team is assembled by the JohnsHopkins.
Patients are desperate for answers that doctors might not have.
"We need to admit that we don't have all the answers," says Dr. Ann Parker, co- founder and co-director of theJH PACT.
It's rewarding to be able to point to a specific test and make a diagnosis and put it all together in a nice package. A lot of things in medicine are messy.
It isn't rare, but no one really knows how common it is.
A study found that about 30% of participants across multiple age ranges reported persistent symptoms more than six months after their COVID-19 infections. Between three and 14 million people in the United States could experience persistent symptoms according to the American Academy of Physical Medicine and Rehabilitation.
The prevalence of long COVID in the UK was put at around 5% by other, more conservative estimates. It would be over 2 million Americans.
There isn't a single approach to treating long COVID.
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For some people, long COVID can be a temporary problem. Fisseha feels like a new reality.
There is no straight way to approach treatment according to Dr. Alba Azola, co-director of the JH PACT program.
Every patient is different and there are patterns emerging in terms of clinical presentation.
Because there is no singular approach to treatment, all sorts of specialists have been brought together as part of the JH PACT. This also includes physical therapists and rehab specialists.
One approach is simply time.
Doctors spend between 13 and 24 minutes with their patients. At JH PACT, physicians spend at least an hour to cover as much as possible, from past illnesses and conditions to family medical history. It can be a lot to remember.
A lot of our patients keep a diary or notes, which is helpful. Through their initial illness and throughout their recovery.
She can focus on their most limiting symptoms if patients give her more information.
It can feel like there's a mountain ahead of you, a mountain of symptoms and challenges in your recovery. I hope that it's helpful to break that down so that each piece is more addressable, instead of trying to conquer everything at once," Dr.
Patients can learn from chronic fatigue syndrome.
There is still a long way to go in figuring out what long COVID is and how it affects people's bodies, and predicting how long it could be until symptoms go away.
Most people don't know what that means.
She has a chronic fatigue syndrome. There are a lot of symptoms that overlap with long COVID.
Sbrana knows what it's like to get sick and never recover. She is a board member of Body Politic, a health justice organization that runs a support group for people with long COVID.
People join the group and ask how long they have to live like this. "This might be a new normal for you and you need to figure out how to build a fulfilling life with how your body and your brain is right now," she tells them.
It might be difficult at first.
"You need to hold space for hope that there is a new treatment or protocol that will help improve your functioning."
Disability accommodations might help.
They would qualify for accommodations at work or school if they have a disability. They might be able to get the disability benefits they have through work or Social Security.
There are obstacles to getting disability benefits. Many long COVID patients never received a positive COVID test because they were in short supply at the beginning of the Pandemic. Some people are having trouble proving they have long carbon dioxide because their blood work is clean.
"There is a presumption that it's just depression or anxiety, but people know when there's something wrong with them," says the director of scientific and medical outreach at #MeAction.
She says doctors and researchers can learn from her.
People with chronic complex disease have been living with this for decades. Seltzer says that researchers have been studying this for decades. We need to use the path that we've beaten down over time and use what we've seen in these diseases with other labels.
For some people, long COVID won't go away any time soon.
Fisseha has spent the last nine months addressing each piece of her disease, and lately she's been having more good days in between the bad ones. She is no longer trapped in her walkup. She has learned to appreciate the small victories along the way.
Being able to go get the mail is something I celebrate. Fisseha said that he could walk to the corner of his block. It's a big deal to be able to walk for 10 minutes.
