Rough couple of weeks, Rare Disease Day and Grinch Syndrome!

Woaaaah! Here is a bit of a long post, but something cool happened yesterday!

I was hit out of the blue with a bad Potsie patch over the last few weeks, major tummy trouble and feeling terrible while snuggeled up in bed incapable of leaving it for what seemed like forever! I am up now again infront of the computer and after yesterday being ‘Rare Disease Day’ I figured I should do a blog update, long overdue!

Other than feeling sick, I dont have major news other than I have joined far more Dysautonomia related groups around the web, mainly on Facebook where I am most active (Be sure to check out our page where it is updated almost daily and you can follow the pages we follow too!)

So through the pages I follow and the friends I have made through the virtual maze of the web I was alerted to the fact that ‘Rare Disease Day’ was yesterday, so I tried to do my part, sharing important links and information on the Irish Dysautonomia Page when suddenly one of the other Potsie girls alerted me to an ABC News show segment that was to be aired last night, informing the public about how Fainting in Astronauts could be linked to people with Pots, however they wanted to refer to it as ‘Grinch Syndrome’, a highly insulting and incorrect term given to Pots with very inaccurate research to back the name up!

The story goes like this:

The admin (Claire Foust Martin) of another Facebook page I am on ‘Team Fight Pots’ put this on our page:

“ACTION ALERT-Tell ABC NEWS Not to Disrespect POTS Patients

Last night (2/28) 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 Lauren (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 Lauren 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, 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.

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 Claire has 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 back here for an update after tomorrow’s show.

Network Programming Feedback
abcnews.go.com
ABC News Network Programming Feedback“

Needless to say, the second I heard the term, having never heard it before, I was highly insulted by my illness, which I consider, although somewhat manageable, substantial enough! I immediately started hounding ABC News on Twitter asking them not to use the term and joining in the endless discussions that were being held around the Dysautonomia groups at how upset people were that Pots was going to be referred to as Grinch Syndrome. Gladly I haven’t had this experience but some people find it difficult to get diagnosed with this condition, wether it is the Dr. doesn’t know much about the condition or the Dr wont take your symptoms seriously, never mind calling it something like ‘Grinch Syndrome’.

Folks were so upset infact that some wonderful people got together yesterday and did this, as I was informed by another page member last night after the show had aired on American TV:

“Thank you Lauren Stiles for all your hard work, and thank you Irish Dysautonomia Awareness people for supporting us! Berna Parnell has told me of your support on our behalf, and we love you!! It worked! 🙂 See the following post from Lauren:

Good news! NDRF spoke with ABC News and they committed to NOT using the Grinch term during tonight’s broadcast. ABC was very concerned that they presented the story in a fair way that does not upset the patient community. They took the time to speak with researchers at Vanderbilt and Mayo Clinic today. We will never know for sure whether they were planning to use the Grinch term or not, but they definitely took notice all of your e-mails, web posts and tweets. Way to go POTS Army!

Now, after the show airs, let’s try to get some extra awareness based on this story. For example, assuming the story is a good one, you can post it to your FB page, your twitter account and your blogs.

NDRF will be sending out a press statement after the show airs – and we are hoping some of the smaller media outlets will pick up on it.”

How FANTASTIC Is that?? It worked, people from across the world who bearly knew each other got together to support one another at this time when we needed to defend something we believed strongly in! It felt really good to be a part of that and WELL DONE to those who did get involved in anyway, its a small victory but a victory none the less! 🙂

Unfortunately the show did not provide accurate information for Pots and concentrated mainly around astronauts and a dud study that says exercise cures everything (Which is Bull, it helps yes but not cures! I was as fit as a fiddle when this hit me!) and again POTS HAS NOTHING, NOTHING, NOTHING TO DO WITH THE SIZE OF YOUR HEART! Thats been proven by ‘proper’ experts! 🙂

Here is the video, you can judge for yourself but I will say the info is inaccurate and loose to say the least but yes, Pots was mentioned and it needs all the advertising it can get! 🙂

The picture below is not mine, It was floating around Facebook

NEWS JUST IN!!

I just got this from the lovely Stacy Reed:  (Thanks so  much Stacy ) 🙂

“Lette, did you see this? It’s written to ABC by the sister of the woman with POTS that was featured in the report. And guess what, today the post is gone! Imagine that…  Grrr!

My name is Leigh Ann Poole. My sister, Kathy Chandler, and I were at the Cleveland clinic for a week of additional cardiac and neurological tests when she was asked to share her story about POTS. This has been a very debilitating condition for her and many other people; and so she agreed to share her story and even repeat tests that were difficult and painful for her – for the camera – so people could learn and understand more about this very life alternating diagnosis. In fact this taping took about 6 hours to film and required her to be stuck 3 additional times for an IV. I accompanied her, often pushing her in a wheelchair, and watched all of the videoing for this story. So what happened? ABC used a few seconds of her story, took it highly out of context, and made her out to be really without disability and even pronounced her “cured” – even when they knew that she hadn’t even received her test results back to determine the cause of her POTS (and there are MANY). Further – she has submitted several responses to this blog that have not been published (even though posts before and after her submission were posted). She has friends and family now thinking her “prescription is simple” and all she has to do is exercise – oh and of course since ABC has declared her “cured” that she can now go back to her everyday life. People are even posting on this site that she doesn’t even have moderate POTS because ABC has made her disabling condition of extremely high heart rate (160) and extremely low blood pressure, extreme fatigue, blurred vision, etc out to be that she is just a “chronic fainter” who is now cured. Very disappointing and an outright total mischaracterization of the facts. I decided to try to post to see if in fact ABC will post my comments since they apparently will not even let her defend herself from these lies on a blog. – Eye Witness

I would also like to add that we could not be more happy with the very thorough care Kathy received from her GREAT doctor – Dr. Jaeger – and the Cleveland Clinic. They truly are wonderful and hopefully will be able to help her”

Posted by: Leigh Poole | March 1, 2012 March 1, 2012, 9:55 am