Demographic Observations

[HopeSprings]

How do I put this delicately? I can't. Is POTS a suburban, white lady disease? I hope not to offend anyone, but it's hard not to notice. The majority are young white women. Our poll results reflect this. It's the same on the Facebook groups. If you scroll through the members lists, you see the same thing. Could this simply reflect internet demographics? Or maybe POTS is underdiagnosed amongst minorities? Are there other diseases like this that seem to have a racial preference? I find this odd and fascinating. Curious to hear any thoughts.

[firewatcher]

I could only wish that it was a "suburban, white lady disease," and that no others were afflicted. Unfortunately, it is more probable that the demographic that you speak of is simply more persistent about getting a diagnosis. There are too many studies from other places like Taiwan, China, Japan and Russia with decent sized patient groups for this to be racially isolated. I know that most of the people on the forum do fit the demographic, but unfortunately again, we have a genetic sampling of just about everyone here as well (from African, Asian and other ancestry...and don't forget the men!)

Honestly, it would be better if this condition only attacked a certain demographic, because it could be limited and easier to study, but unfortunately I don't think any ethnicity is immune.

[corina]

although this can be an edaquate reading from the polls you put up i don't think this is representative. when you look at the topic "nationality" page 1 and 2, you'll find out that there are studies done all over the world. also you have to take into consideration that not every one here (at dinet) does polls. Not to mention the fact that although DINET's got a very wide reach, we have little (if any) members from russia, china, asia and other parts of the world so all in all you can't come to a reliable conclusion based just on this poll, whatever the outcome is.

corina

[HopeSprings]

Firewatcher- Yes, that Nationality post addressed exactly the questions I had. Very informative answers - thanks for showing me.

Firewatcher said:

One thing that is of note, like many other diseases/conditions, orthostatic intolerance is far more prevalent among whites and more specifically women. If you look into aero-space research you'll see that Blacks have incredibly high tolerance for orthostatic stress, so you would be unlikely to find many POTS patients from that ethnic group. There are simply some diseases that hit certain races or genders harder than others and ours is poor orthostatic tolerance.

Another thing to note is that it could simply be misdiagnosed or underdiagnosed in other populations. Goodness knows that it is hard enough for us to have gotten a proper diagnosis to begin with, and the US/Europe/Australia are supposed to have the best healthcare in the world.

And said:

I've come across studies from the US, Greece, Spain, Poland, Russia, China, Japan, Israel, India, Brazil and Australia. Not all countries will call this POTS, in Asia it is Orthostatic Dysregulation. I think that those diagnosed with POTS are primarily the US, UK and Australia, but if you search the term orthostatic it brings up many more hits from all over the globe. The one group that seems "immune" is anyone of purely African ethnicity and then there are studies of how strong their tolerance to orthostatic challenge actually is compared to everyone else. I think that the prevalence of European ancestry is simply a reflection of the participants of this forum.

[Katybug]

I was really fascinated to see how many of us are from "Generation X". That made me wonder what kind of environmental factors might be at work with us, or, again, is that just a scewed stat because of who is using this forum? It is definitely all interesting though. My POTS specialist is supposed to be a a big medical conference this month. I'm going to ask him on my next visit (Oct.) if the medical community has any of this demographic info tracked and if so where to find it.