Apr 17, 2011


My Aunt was just at the airport in New Jersey, and she met a young lady in a wheelchair while waiting for the plane.  She started talking to this young lady, and found out that she was on her way to Mayo Clinic to be seen for POTS.  My Aunt immediately called me to tell me about this young lady.  She was form Texas and had participated in Dr. Levine's exercise protocol.  Small world.  I am on the wait list for Mayo Clinic and I'm waiting to hear back from Dr. Levine's team about getting me enrolled in their second round wide-scale exercise study.

A few weeks ago, my mom's friend calls from her office, to tell me that her co-worker's niece was just diagnosed with POTS and doesn't know what to do.

My neighbor has a friend who's son was diagnosed with POTS.

My doctor think she had a patient a few years ago who had POTS, although the patient was never diagnosed with POTS because no one had ever heard of it.

This is so strange.  I never heard of anyone having POTS for the first 32 years of my life, and then I hear about 4 people within a few months of my diagnosis!  No to mention the hundreds of people I've "met" on the internet who have it.  Some from Long Island too.

I'm sure it's just a coincidence, and likely as more people are diagnosed, more doctors are going to learn about it, which means that even more people with get an accurate diagnosis.  I try my best to tell every doctor and nurse I meet about it, so that next time they see a patient with my weird symptoms, maybe they will think twice before sending them home without a diagnosis.

If every person diagnosed with POTS in the US (500,000 and counting) tells 10 people about POTS, and really takes the time to explain it to them, POTS can become a "well known" illness in no time.