Dysautonomia Awareness Month 2013

In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from Dysautonomia SOS you can share to spread the word:

Sized for Facebook and Instagram.

General flier.

Sized to be a profile pic on Facebook.

I love all my POTSies :)

Humor is the best weapon sometimes!

See? Humor. Win.

This is sized to be a Facebook header.

Happy October!!!! Let's spread the word homies!
---Claire

It's here! Dysautonomia SOS's Website is FINALLY Here!

YAY! The Dysautonomia SOS site is up and running. 

Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!

Thanks to everyone that helped make this a success! 
--Claire

Find Others! Join The Dysautonomia Social Media Directory!

Let’s connect online! Add yourself to our interactive map and find others online and in your area. You can upload pictures, online contact info, blogs, websites, and more!
https://www.zeemaps.com/map?group=460425#

***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.
THANKS!
https://www.zeemaps.com/map?group=460425#

POTS in the news!

Recently, there was a two part series about POTS that was very well written, and included the stories of the son of one of Dysautonomia SOS's volunteer's, and myself!

Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:

Is it depression, anxiety or POTS? The first article of a two-part series

Local Life November 13, 2012 4 Comments and 1 Reaction

John Point

by Sue Ann Rybak
John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.
At first his parents and the doctors thought he had mononucleosis. But after a battery of tests, including CAT scans, an electrocardiogram (EKG) and allergy tests, and a heavy dose of antibiotics, the doctors could find nothing wrong with him.
“Somewhere around the third or fourth test for mono, the doctor said, ‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I don’t think he has invented this.’”
“You just couldn’t get John out of bed in the morning using proper or improper motivational techniques,” said Steve Point, his father. “Yelling at him and dragging him out of bed didn’t work. But, he didn’t seem like he was so sick that he couldn’t get out of bed.”
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.
“There is a giant email address list that goes around and there are a number of physicians on the list,” Steve said. “So, I thought maybe someone can recommend a doctor at CHOP. (Children’s Hospital of Philadelphia), who specializes in weird diseases.”
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he performed a “tilt-table test,” which is one of the techniques for detecting POTS (postural orthostatic tachycardia syndrome). During a tilt table test, a patient lies on a table that moves from a horizontal to a vertical position. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of having POTS is 40 minutes or until they faint, at which point the test is concluded.
It was February 2010 when Magnusson diagnosed John with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats a minute, or a heart rate that exceeds 120 beats a minute, within 10 minutes of rising.
READ MORE HERE

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

Local Life November 21, 2012 0 Comments and 1 Reaction

Claire Martin with her baby girl, Gabriella.

by Sue Ann Ryback
(The second of two articles)
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out Solutions, knows first-hand the obstacles and challenges of living with POTS (postural orthostatic tachycardia syndrome).
The mother of two young children, Lukas, 4, and Gabriella, 14-months, Martin had her first POTS episode at 24 while studying marine biology in graduate school.
“I was setting up an underwater research site in the Keys,” Martin wrote in an email during her twelfth day in the hospital on Wednesday, Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and felt like I was going to faint for the first time.”
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.
Martin, who was studying sponge ecology and growth rate studies in the Keys said, “I was having trouble functioning, and I definitely couldn’t scuba dive anymore to continue my research.”
Martin, who now lives in Virginia Beach, Va., said she was a very active child, teenager and young adult. While she doesn’t know the exact cause of her POTS, she suspects it could have been the result of a spinal fusion in 1999. But, she didn’t develop POTS symptoms until years later.
READ MORE HERE

_____________________________________________________________
We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this!

I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. Contact us if you'd like help!

I'll be back writing more soon, we are in the final stages of editing the new website, which has been taking all of my energy. Love to you all!
Claire

Dysautonomia Awareness Month Wrap Up Events!

Well, only a few days are left in the first ever Dysautonomia Awareness Month!  There is still a lot going on, we will end the month with a bang. Here is a quick break down of 2 cool remaining events.

Join the Social Media Dysautonomia Directory!

Hey folks!  Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard of, but supposedly a bunch of people actually have! We just have to find each other!

We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.

One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.

To register, you can click THIS LINK, or fill out the form below:

Subscribe to our Social Media Dysautonomia Directory:

Welcome to the Social Media Dysautonomia Directory! Provide as much or as little info as you like, and find others online that deal with dysautonomia. We will not send emails or contact you with the info provided, this directory serves as a way to connect with people and find support online. As always, be careful to only list info you are comfortable having displayed publicly, and we are not responsible for any interaction on social media taking place. You can remove yourself from the directory anytime.

YOUR EMAIL ADDRESS WILL NOT BE DISPLAYED ON OUR WEBSITE.

* indicates required

Email Address *

Online Name *

City, State, Country

Website/Blog

Facebook Page/Profile

Twitter @ Name

Instagram Name

Tumblr Name

Other Social Media:

Diagnosis

_______________________________________________________

The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website. 

Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:

  

Love to you all, and thank you for the continued support!

Claire

POTS: The Basics

I'm re-upping this, as we are almost done with the new nonprofit website, and most of my new "material" will be headed over there.  This a POTS 101 type summary, hopefully easy to understand and useful :)  ---Claire

POTS: An Overview

Postural Tachycardia Syndrome

POTS: The Basics
Find links to in depth information and resources for POTSies at on our Dysautonomia SOS website (under construction).

POTS is short for Postural Orthostatic Tachycardia Syndrome.   It is referred to by some physicians and researchers as Postural Tachycardia Syndrome, or just Postural Tachycardia.  It is a type of Orthostatic Intolerance, and also a type of Dysautonomia.   Let’s break down what that name means:

Postural means relating to posture, or a change in position.

Orthostatic means relating to, or caused by erect posture (standing up).

Tachycardia refers to a rapid heart rate.

Syndrome means a collection of symptoms, and not a disease. Technically, a syndrome is defined as a group of signs and symptoms that occur together and characterize a particular abnormality.

So, POTS is a collection of symptoms that result from a heart rate increase when standing up.  When a person with POTS stands up, the heart pumps faster to help keep the blood pressure up, and try to help the blood in their body reach their brain and other vital organs.  The body of a person with POTS does not respond to gravity the same way a non-POTS person does. 


The majority of POTS patients are female, of child bearing age, and under 35.  There are thought to be anywhere from 500,000 to millions of people in the US with POTS and other forms of Orthostatic Intolerance.   There are no solid published statistics or data at this time, these are estimates from the major research centers that treat POTS.

October Is Global Dysautonomia Awareness Month!

And of course we now have tee shirts!  In men, women, and kids styles:

Choose to be Chronically VISIBLE

Alrighty.  Time for an Op-ed.   It may tick some people off. 

I see much posting going on regarding INVISIBLE ILLNESS and spreading awareness by promoting the idea of an illness being invisible.  This term has always bothered me, as I have mentioned before on this blog.  It has the ring of victim/helplessness to me, and I tend to like things that are assertive, proponents for change, and action oriented.


I think the problem here is two fold:
1.  There is no invisible illness, JUST IGNORANCE.  What illness is truly visible?  There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill."  And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse. 

2.  People find their identity in the "invisible illness" movement, and use it as something to hide behind.  NOT EVERYONE.  I know that is probably not most people's conscious intention.  Many are looking to find a way to spread awareness, which I commend.  But is this how any of us want to be known?  As invisible?  Is this the best way to spread awareness? 

What society sees are deformities and stereotypes.  Not illness.  They see something out of the ordinary and recognize something is "not right" with that person.  This actually has nothing to do with if they are "ill" in some cases.   Is an amputee ill?  Maybe.  Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons.  This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change.   We need to speak about our conditions by NAMING THEM, and being visible, not promoting an image that quite frankly can be a bit whiny sounding at times.

Volunteer Positions for Dysautonomia SOS!

We are on our way!  Very excited about the amazing team we have forming for Dysautonomia SOS, the new Non Profit serving VA, DC, MD and beyond.  A formal announcement will be coming soon, but we still need help!  If you or any family/friends are intersted in volunteering, please contact us at dysautonomiaSOS@gmail.com.  Together, we can make a HUGE difference!

Dysautonomia SOS Volunteer Project List

Dysautonomia SOS is a new Non-Profit organization forming to better serve the VA/DC/MD area’s dysautonomia patients, as well as providing materials for everyone online.  We need your help to get up and running, and start improving the lives and treatment options for patients. 

If you are interested in any of the following projects, please email Claire at dysautonomiaSOS@gmail.com.   Please use the exact project name to identify what you are interested in.  Feel free to tell us about yourself so we can get to know you as well.  Patients, family, caregivers, and friends are all welcome to volunteer!  Thanks for your interest and support in making this a success!

Physician Listing Coordinators:  Update the physician listings for VA, DC, and MD.  We will need the name, specialty, facility name (if applicable), phone, email, and full address. We are looking to list anyone who treats and has experience with dysautonomia, including primary care/internal medicine doctors.   If you would like to research a specific region, let us know.

Content Editors:   Review materials for the newsletter, web content, brochures, scientific write-ups, and any other content to check for grammar, punctuation, and content accuracy.   

Science Writers and Advisors:  Looking for anyone with a scientific or medical background to help write educational materials for a variety of projects, and review materials periodically.

Newsletter and Feature Contributors:  We will need contributions for our newsletter and web features on a regular basis. Everything from patient stories, to regular columns related to living with Dysautonomia.  Parenting kids with POS, caregiver stories, diagnosis stories, treatment options that have worked for you, etc…

Sponsorship Coordinators:  Collect and research local/regional potential sponsor information.  Anyone providing services that pertain to dysautonomia, or any personal contacts with businesses that would be willing to be a sponsor need to be compiled and eventually contacted.  If you would like to research a specific region only, let us know.

Events/Fundraising Coordinator:  Oversee and aid with local and regional events.  Find creative ways to fundraise for the organizations projects and research we are supporting. Professional event experience preferred.

Accountant/Bookkeeper:  Someone with NPO  to prepare our annual report and help with bookkeeping.

Regional Support Group and Event Hosts:  VA/DC/MD is a large region!  If you would like to host an event or support group in your area, let us know.  Whether it be a Skype meeting, in person, or an official event, we will need as many people as possible helping with this.  

Social Media Coordinator:   Make sure all social media accounts are up to date and the latest news is being shared about our organization in a professional manor.   

Media Blast Brigade:  We need lots of “Re-Tweeters” and “Re-Posters” of important news and announcements across social media.  If you would like to updated on any new happenings or announcements that you can share with your network, send us an email and we’ll keep you posted (so you can re-post!).  This is a VERY important part of our awareness campaign!

General Volunteers:  We will always need volunteers!  Want to be notified when new projects and positions come available?  There a ton in the works.  Email us and we’ll keep you updated!

Non-Profit Organization Update: How To Get Involved

I have mentioned on this blog before that I am co-founding a new Non- Profit.  Some things have changed that I wanted to disclose and update you all on.

HISTORY OF THIS PROJECT:
Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD.  I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop.  Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured.  Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way.  Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out.  Bloggers and frustrated patients, yes - organizations, no.  So I decided I would start my own.


I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea.  Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before.   

Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD.  The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge.  That needs to change.  That can not be done with a blog alone.

We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team.  More details will follow as they evolve.  My goal has always been to educate educate educate - and empower patients to improve their lives.  


So the new non-profit will be called.....drum roll please........

Dysautonomia SOS: Searching Out Solutions 

The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia.  Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH.  We will provide basic info on the others.  We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research.   AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.

We have a great group of volunteers and medical advisers, but are looking for more help.  We are 100% volunteer run, and applying for 501(c)(3) tax exempt status.  We are laying out clear cut ideas and goals so that everyone that volunteers knows where we stand and what we want to achieve.  They include (but are in no way limited to):

• Focusing on POTS, Syncopal disorders (NMS/NMH, OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders.   Providing information of the other forms of dysautonomia and links to resources,
• Empowering and educating patients, caregivers, medical professionals, and the public by providing credible, medically reviewed educational materials and solutions for everyday life, available for FREE to everyone online,

• Providing free brochures and access to these materials in doctor’s offices, hospitals, schools, and other applicable public places across the VA/DC/MD region (you will be able to order these materials to print and distribute in your own region outside VA/DC/MD as well), thus increasing public awareness, decreasing diagnosis time, and improving treatment options for dysautonomia patients,

• Funding research, fellowships, new autonomic equipment, and projects that directly impact and improve the lives of patients in VA/DC/MD, &

• Working together with the medical community , other organizations, and public to provide support and improve the quality of the lives of dysautonomia patients in our region and around the world.

If you are interested in volunteering, even a small amount of time - please email me for a list of positions and needs we have right now, or if you want to receive updates and info on volunteering as it becomes available.  And you don't have to be in VA/DC/MD or know about Dysauutonmia to get involved!   I still hope to work with the other organizations out there, I really feel like we are such a large patient population, and we need to unite to get things done, especially regarding awareness and research.

This may be wishful thinking, but who knows?

If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at dysautonomiaSOS@gmail.com.  Volunteers do not need to be located in VA/DC/MD, as we will be providing services that aim to help and are available to EVERYONE.  

Thanks!
Claire

Save the Drama for Your Mama (and the Grinch)

I am fairly new to the Facebook online support community for Dysautonomia and POTS.

This has nothing to do with this post. But I like it.

I have been a member of DINET for years, but stayed away when I was feeling well - it had become depressing and was scaring me that I would end up like others on the forum (ironic, since I now am!).  But the forum was always kind, safe, supportive, and closely monitored - and I feel the people on there are super nice and not the types to attack others who have differing views.  Nothing has changed, if you are looking for smart people to help you navigate resources and deal with dysautonomia, you should check out the forum.  I became active again (it had been so long I had to re-register!) while half dead after all my pulmonary embolisms and in the hospital in early 2011.  I'm glad I did, and I still am on there a few times a week reading and sometimes posting, because it is such a great place to find support.

After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well.   This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up.  I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.

Finding Your Cause: The Project (need your help!)

I am on a "Find your POTS cause" crusade, which I think actually applies to Dysautonomia in general as well.  I have a plan for compiling a large printable sourced guide that you (and I!) can hopefully use to try and navigate the diagnosis process and make it a bit easier.


So this will be a multi- part process, and I need your help!

• Part 1 was explaining the need for this, exploring the definition(s) of POTS, and getting a starting point collection of known causes of POTS together with medical journal sources and citations, and I have received awesome feedback with suggestions for additions to the post: What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide

 

• Part 2 will involve adding the appropriate testing for all the causes listed in part 1, and separating this into a new printable guide.  If you are up to helping on this, please contact me!
  
  
  
  

• Part 3 will involve personal stories of people living with these diseases, causes, and issues related to POTS.  I'd like to feature a brief (or long if you prefer) write up on a persons journey to getting their cause diagnosis.   PLEASE CONTACT ME TO IF YOU'D LIKE YOUR STORY FEATURED!  Stories of success and hope are needed as well! 

   

  Thanks everyone, and much of this will hopefully transition over to the new Non Profit I am founding, Dysautonomia SOS.   More details on that coming soon.  Lots of work going on behind the scenes, very exciting stuff!

  ---Claire

 

Nominate a POTSy Mom or Dad!

Hey everyone!

My munchkins <3

With Mother's Day and Father's Day fast approaching - consider nominating your favorite POTSy parent for local and national "Best Mom" or "Best Dad" !

I know loads of amazing parents caring for their kids that have POTS, as well as POTSy parents trying to raise kids while battling this condition.  We know how hard both are!

That person may win a cool prize AND get some much needed publicity/awareness for POTS!

What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide.

Many of us hear by our doctors that POTS is "no big deal." 

Or they just plain have no clue what it is.  

Or, "you just have POTS."

Why do they think this?  Why don't they know what it is?  If an estimated million people have it, and even more have dysautonomia in some form, why don't they know?

As  patients (and hopefully the caregivers that see how sick we can be on a day to day basis), we know how big of a deal it is.  We know what a struggle POTS is, and how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.   So why is this the view by so many in the medical profession, and why is it so unheard of?   I have been contemplating and compiling this list for a while now, and in light of the people we have lost recently in the POTS community, I thought this may be useful for those of us trying to find the cause of our POTS.  Also to explore why it is a big deal, even if POTS per say will not kill you, and why, in my opinion, it is absolutely necessary to find out what is causing your POTS.  Not only to rule out the really dangerous stuff, but to avoid the medication merry-go-round, as I like to call it.     

Keep Calm, It's All In Your Head...

WEGO HAWM CHALLENGE DAY 9:

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? 

Um, yes!  Here it is....

Why I Write About POTS: #HAWMC Day 4

Day 4 WEGO Health Challenge:
I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.

The main goal of this blog was to create resources for patients and awareness for the public for POTS.  I had none when I was diagnosed, I don't want others to go through the same.  I write on my personal blog over at Bye Bye Bella Flora for therapeutic and personal reasons, but this site was created to help others, and by doing so it helps me as well.


In my pre-POTS days, I wrote for scientific publication as a marine biologist, and enjoy reading and researching, and hopefully sharing that info with others.  I have no desire to be profound or poetic, I like to link out to others that do that for me.  I don't normally post inspirational quotes like the one on the right.   I'm more science minded - and I want patients and families to have a place to find resources for dealing with everyday life: tools for dealing with family, friends, employers, DOCTORS, and medical professionals as a whole, because my journey has been a bit rocky with the MD's.  

I also have a passion for silliness, and the best way I've found to cope with this ridiculous disease is to make fun of it sometimes.   Laughter is how I have survived the last decade, and especially my nine months of confinement in the hospital, and now seven months at home with no outings.  This blog gives me purpose for now, at least I feel I'm trying to do something, instead of rotting in bed doing nothing. 

I've been a bit lax recently in posting new links and resources because of the new BIG project I'm helping found, and I can't wait to share more with everyone.  The next few years are going to be very exciting, and changes - they are a coming!  For the better.


Sending love and thoughts of upright posture.....
Claire

What The Hell is POTS?

I made this based on a pole of the experiences of POTSies in the ER, and hopefully as a funny educational tool.  It is a bit PG13, the only bad language is "freaking" and "hell" said many, many times.  Feel free to share.  Enjoy!

The ABC News Aftermath; Junk Reporting and THE GRINCH Making Life Harder for POTS Patients

As many of you in the Dysautonomia community know, ABC recently aired a segment on World News Tonight with Diane Sawyer about POTS (on 2/29/12).  Leading up to that broadcast, a series of events took place that amazed me and reinvigorated my faith in the power of patients as a community.  We mobilized.  We complained. We used every connection we could.  And it worked - sort of.

Here is a breakdown of the history of, and problem with "The Grinch Syndrome", along with a timeline of what took place over the last week.  I also include a call to action (once again) from our amazing POTS warriors to force change that is long overdue.  

THE GRINCH PROBLEM

There is a researcher out of Texas named Dr. Levine who proposed that POTS be renamed The Grinch Syndrome.  He did this based on his study that was published in the Journal of American College of Cardiology in 2010 called Cardiac Origins Of The Postural Orthostatic Tachycardia Syndrome. The presumptuous name of the study is the first clue as to how preposterous this "study" and its "conclusions" are.  Levine and his researchers claim that, "These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective non-drug therapy for POTS patients."

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.