Is Pots/dysatuonomia Considered A Rare Disease?

[erikainorlando]

I found a site called NORD that is a foundation for rare diseases. Is POTS considered a rare disease? Does anyone know?

Thanks guys...Erika

[janiedelite]

It seems kind of misleading because they also list carcinoid syndrome on NORD (my mom has this). One article on carcinoid syndrome said that 1 in 100,000 people develop carcinoid tumors and 1 in 10 of those patients get the syndrome. So that makes my mom 1 in a million.

But POTS research suggests that "POTS is a fairly common experience" (Mayo Clin Proc. 2007 Mar;82(3):308-13 Postural orthostatic tachycardia syndrome: the Mayo clinic experience).

This is on the POTS: An Overview section of dinet.org:

"It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education the number of people found to have POTS symptoms is steadily rising. It is now estimated that one out of every hundred teens has POTS (Fischer, 2007)."

Perhaps POTS is just rarely understood.

[MamaTrain]

Perhaps POTS is just rarely understood.

LOL! Had to laugh at that one! :-)

[tinkerbella]

http://www.rarediseases.org/search/zcat_se...IT=Submit+Query

Disease Information from NORD, National Organization for Rare Disorders, Inc.

well it is listed there and oringinally my neuro told me to go there.

[erik]

Is good music a rare occurrence at a Grammy awards ceremony? (rhetorical question

The US technical criteria for "rare" is 200,000 from what I remember (NIH cutoff I think), which might make POTS "not rare" given the half-million estimate, but statistics have several ways of being slippery. Some specific causes of POTS are definitely "rare" by that standard, such as NET deficiency... which I've seen listed in published agendas for discussion on "rare disease research" conventions (by participants from Vanderbilt, as one might guess).

[firewatcher]

I don't think it is as "rare" as most doctors believe. Firstly there are all the people who accept the notion that it is "in their heads" or anxiety and just go along with their doctor and never feel any better and are completely undiagnosed. Then there are the milder cases that just aren't mentioned or treated. Then there are the "old docs" who just treat the symptoms and never crack open any new research on anything or report the patients they see with POTS/OI because they've never heard of it. I am also finding in my research that this is not a "skinny, white woman's disease," that it is finally being recognized and treated in countries like Japan, Brazil, Pakistan, Russia and India in both men and women. It is often called by other names in these places. We are not alone, and the recognition is growing, I just wish the research was as fast! We don't even have accepted sub-types yet!

Oh, and then there is the dysautonomia present in diabetes, parkinson's and all the other "recognized" diseases. I just recently found out that my sleep disorder qualifies me for special accommodation in the workplace under the American's with disabilities act, I just wish my kids' school took that! Or even my kids for that matter!

I think that the next ten years are going to "blossom" with awareness and hopefully research, just like sleep medicine did ten years ago.

[juliegee]

Yes it qualifies under NORD (per Bella's link) and the NIH registry for rare diseases. Here is the link for that one:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/index.htm

Don't you feel SPECIAL???

[MomtoGiuliana]

My specialist told me he believes it is far more common than we realize b/c it is so rarely diagnosed still.

[janiedelite]

I think that the next ten years are going to "blossom" with awareness and hopefully research, just like sleep medicine did ten years ago.

I certainly hope so!

[iheartcats]

I knew it was classified as rare...but I always wonder about how under-diagnosed it is. We've all heard stories "well for years I had some dizziness and racing heart" but the person ignored/tolerated/blamed it on anxiety/etc. And the doctors not believing people.

A family member of mine - I have a hunch they have something but they kept testing them for anxiety and stuck them on Lexapro. And said they probably just had 'vertigo.' How many people run into a similar experience?

And I know you just get used to fatigue and the weird symptoms to a point. It's your normal. If we had a faerie grant us a week of 'decent normal health' we'd probably be like whoa, you are supposed to feel like this? As I ignore my weird pains and such, at least this is what I think!

[erikainorlando]

Thanks all! Yes...it is probabl more common than we think but I am always taken back when I hear about those with POTS who can ignore symptoms...I kept collapsing.....compelety impacted my life...made me "stand up and take notice"........ha ha Perhpas because the onset post-viral seems so sudden.

[Chris]

I found a site called NORD that is a foundation for rare diseases. Is POTS considered a rare disease? Does anyone know?

Thanks guys...Erika

I was just diagnosed in October 2009 and guess what? My next door neighbor also has POTS! Imagine the odds! I think there are a lot of undiagnosed people out there, and it's not rare when it happens to you!

[Poohbear]

I think the data has shifted over the years and they now know that POTS is really not that rare but it is often misdiagnosed.

[Troy]

This is going to sound odd but how a rare it is depends on the person because not all POTS is the same, my version of the POTS is very different then everyone else and extremely rare because of the circumstances that caused mine left me with very different symptoms. For example someone who developed POTS due to a viral cause has different symptoms and a different version of POTS than someone who developed it from a drug overdose such as myself. Because the drug overdose damaged other areas of my brain and autonomic system then the areas a viral infection would so the outcome is also very different, even though the doctors call it POTS, compared to you guys its like I have atotally different illness altogether which is very frustrating for me.

[erikainorlando]

Yes....that makes sense and is my thinking too.

I am sure there is a more of a breakdown. Even if one just takes a look at the difference between those with EDS/POTS...POTS in teenage growth spurts...POTS from viral illness...let alone POTS from circumstances such as yours.

I am sure there is a huge difference on POTS from different etiologies.

[joy]

no it isn't from my understanding particularly rare

haha on NORD it said RND was rare, and it isn't either.

I think that people classify things that are hard to diagnose or not as understood yet as rare

which is true in some ways

[erikainorlando]

Joy - what is RND? Sounds rare to me!

[chipper]

Bedfast is rare. Thank God

[joy]

Joy - what is RND? Sounds rare to me!

Reflex Neurovascular Dystrophy

I have a thread explaining it out a little more but it causes pain, numbness, weakness, and you can have it internally as well

newer Dx that is becoming more widely known with many people being diagnosed after years of being ignored