Reflex Sympathetic Dystrophy Support Group

Does anyone know if RSD is rare? Does anyone know the statistics? Craig? Twinkle?

Thanks.

Lazy1 they use to say it is but now they say about 3 million people in the US have it and that could be an under count. It could be over 3 million now.

HI..... when I was first DX'd with RSD...I was told about 3000 people in the US had been Dx'd with it...... but many more we on the other side of the pond....... where more research was being done.....

Craig

Fletch I guess it's another one things that varies of with what you read and from who I just looked at two different RSD websites and have read two completely different things about this.

my dr. in nola in march of this year said that 1 in i think it was 1000 (either that or 10,000 but im pretty sure 1000) sprains gets RSD and i read that in switzerland it's like 5% of every 100,000 people get RSD or something to that affect. RSD compared to other diseases is rare especially since the numbers of people diagnosed in the US are so small with us being such a large country. when i was diagnosed and when my PT and dr. suspected i had RSD they said it was rare. although i don't think it's as rare as some people are lead to believe or as rare as other diseases are (i know about 4 people with RSD)

in other countries all the RSD specialists meet once every certain amount of years (such as 1 or even 5 at the most) to discuss treatment, diagnosis, and everything pretaining to RSD. i know for a fact that in switzerland they still do because thats where they are doing all the research on the genetic aspects of RSD and they have more people over there who have been diagnosed. however, the US has not held a meeting like this since around 1992 or 1995 because compared to the size of our country not enough people have the disease for it to be that much of a priority for them to meet. also, im pretty sure there are international meetings where drs. come together to discuss RSD but yet again the US has not been present. ridiculous?- hell yes!

Mandie

Hi Mannis

This is copied also from RSDHope.

How many RSD patients exist in the USA?

THERE ARE MILLIONS OF VICTIMS OF CRPS/RSDS ALL ACROSS THE USA and of course, the world. The best estimates placing it between 1.5 Million and 3 Million. Until more research is done, and more Doctors are educated in the correct diagnosis of RSD/CRPS it will be impossible to determine and exact count.

Boo

HI...what I was trying to say..... was ...... I was DX'd back in 1999..... with the RSD....

And according to all the studies... here in the USA...only 3000 people had it .....here in the USA.. THEN

Craig

Thanks everyone. My dr. seems to think that it is pretty rare. He probably meant compared to other problems.

Fletch that's what I thought, or something similar anyway. But you will hear different things depending on where you go I wish they were able to have straight facts on this don't you.

Boo

My dr told me one in 12000 after a trauma but e/o seems to say s/t different.