Wednesday, February 29, 2012

I am not a GRINCH!

ACTION ALERT-Tell ABC NEWS Not to Disrespect POTS Patients
Last night (2/28/12) ABC World News with Diane Sawyer did a segment on Cardiogenic Syncope. They showed a preview clip of tonight's segment with fainting astronauts, and we know that is going to be about POTS(Postural Orthostatic Tachycardia Syndrome).  Fellow POTSy (POTSGrrl) called ABC News tonight and spoke with the reporter who prepared the POTS/astronaut story.  Claire from STOP POTS called as well, and spoke with the reporters assistant.

After she told her she had POTS, she said something like "you mean Grinch?".  This means that ABC may be doing a story on POTS tomorrow night and calling it the dreaded Grinch Syndrome - a degrading and negative term invented by one doctor who did a deeply flawed study on a mere 18 POTS patients, and decided that all POTS (in the million+ person POTS population) was caused by deconditioning, and that all POTS patients have small hearts like the Grinch.  It is disrespectful, disgusting, and more importantly, WRONG.  Credible POTS researchers have known for years, and have published numerous studies, noting that POTS is caused by many different ailments; neuropathies, autoimmune diseases, EDS, viral infections, MCAD, pregnancy, head/neck traumas, Chiari malformations, post-viral onsets, pregnancy, etc.  Moreover, as most POTS patients have had detailed cardiac imaging, we know that most POTS patients do not have small hearts. 
this is not how we want POTS represented!
I have had extensive heart imaging over the last decade, and have never been shown to have a small heart.  ON the contrary, my heart is always deemed "healthy, just beating too fast"!

We have been planning and mobilizing to campaign against the use of this negative and inaccurate term on a nationally broadcast network show.  We are reaching out to all the major Dysautonomia related organizations, and I have sent a lengthy email directly to the producers of the show through various family media contacts.   But we still need your help!

With regards to ABC News' story on POTS airing tomorrow night, February 29, 2012, please contact ABC News right now and tell them not to use the Grinch term in their story.

Click on the link below and select from the show listing "ABC World News With Diane Sawyer, and please say something like this:

I look forward to your POTS segment on Wednesday night. Please do not use the ridiculous Grinch term that one doctor is out there promoting. Not everyone with POTS has a small heart and there are many different causes of POTS, not just deconditioning. Repeating this unprofessional term on air is disrespectful to the million plus POTS patients in the US. Please do a good story on POTS and interview one of the credible experts like Dr. Blair Grubb, Dr. Philip Low or Dr. David Robertson.
You can add your own comments as well - especially if you know the underlying cause of your POTS or your family or friend's POTS.

Also, if you are on Twitter, use @ABCWorldNews or @DianeSawyer and tweet something along the lines of (this is under 140 characters):
@ABCWorldNews please listen to the million + #POTS sufferers and do not use the Grinch syndrome term! Many causes, term insulting! RT please

If you are on Facebook, please re-post to any pages, or your timeline as a call to action from family and friends.  Cut and paste the above information, and lets get this story trending!  POTS going viral, for the right reasons, would be amazing and benefit us all in terms of awareness.

THANK YOU and tune in tomorrow night to see what they say.  If the story is at all negative, revisit this same ABC website and complain.  Check out this site for an update after tomorrow's show.

Thanks POTSies!  You guys are amazing!  Look what we can do as a community if we team up and work together - even if we do it from a computer laying down (like me!).

No comments:

Post a Comment