Most of the POTS community knows that last night on World News with Diane Sawyer, they discussed astronauts and their connection to those with POTS. (We originally heard a rumor they were going to discuss "Grinch Syndrome", an ugly nickname for a small section of POTSies; thankfully our pro-active attempts prevented that!)
While I understand the segment was to show how connections can be made through various studies, I (and most of the POTS community) found the segment made us uneasy. There were several inaccuracies that ruffled our feathers. ABC News only allows feedback up to 500 characters to be sent to them, so I'm going to send them this snail mail copy:
Dear Diane Sawyer and ABC News,
While we appreciate you not using 'Grinch Syndrome' in your mention of POTS, there were an incredible number of items I/ we feel need to be corrected as they were not correct and misrepresent POTS and the people who have it:
1. POTS is not a heart condition. It is a form of dysautonomia or autonomic nervous system dysfunction/ failure that affects not only the heart, but every system in the body.
2. Only a very small subset of POTSies have a smaller than average heart. Very few. Most of us have normal size hearts.
3. Only a very small subset of POTSies acquired POTS from being deconditioned. Most of us were active, fully functional, vital human beings prior to POTS. Myself included, thank you.
4. The study on astronauts included a mere 18 patients. Their results are nowhere near typical for the rest of us. Of course exercise 'cured' them, their hearts shrunk from lack of work/gravity. FYI 99% of us aren't astronauts...
5. There is no cure for POTS. Period. Exercise can help those who are able to do it, but can be hazardous to the health of those who can't. Exercise does NOT cure a nervous system dysfunction. If it did, diseases like MS and Parkinson's would be eradicated. At best, exercise can help minimize symptoms. If exercise is missed, POTS flares up again. Several specialists agree that it is in no way, shape or form a cure. The underlying condition is still there. (Also the idea that POTS is fatal but exercise can cure it is beyond a misrepresentation of facts.)
I really wish you would have interviewed actual POTS specialists, not those with tangential connections to the condition, as well as patients, and that you would have checked your facts before disseminating false information to the public. This is why there are so many hurdles with diagnosis, treatment and understanding. Items like this don't help us raise awareness or help our teachers, doctors, friends and family members to understand our condition. Please, check your facts, do interviews with the right people and make corrections to help bring proper exposure to POTS and those who suffer from it. The quality of our lives literally depends on it.
Thank you,
A disappointed (and slightly offended) POTSie.
