I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."
That was frustrating.
Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.
I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were already full with patients and his waiting list was several months long. My mother and I found a clinic at the Vanderbilt Autonomic Dysfunction Center and applied before we even left the hospital. I didn't hear back from them for 3 weeks; when they finally called me, they told me that I had an appointment on March 8th. This was in July.
There are over 70 million people suffering from various forms of dysautonomia and there are just not enough doctors to help us.
That was frustrating.
Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.
I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were already full with patients and his waiting list was several months long. My mother and I found a clinic at the Vanderbilt Autonomic Dysfunction Center and applied before we even left the hospital. I didn't hear back from them for 3 weeks; when they finally called me, they told me that I had an appointment on March 8th. This was in July.
There are over 70 million people suffering from various forms of dysautonomia and there are just not enough doctors to help us.
We must be working to increase physician education on autonomic disorders to provide better care for patients, in a timely manner closer to home. You can make a difference today by supporting Dysautonomia International's physician education work.
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