Rare diseases list
 

RSD, CRPS is mentioned on the rare diseases list at Orphanet.

This might come in handy for those of us who have court cases. Might be very useful information for your lawyers.

http://www.orpha.net/consor/cgi-bin/index.php

You have to search for the full name "reflex sympathetic dystrophy", and then you'll get a page that links to "algodystrophy", click on that and then the MIM number will take you to more information.

In my country, there's a separate list:

http://www.radiorg.be/

Wanted to share.

I've seen that before. IMO, they need to take anything saying RSD and rare in the same sentence down. It's not rare at all and it's only the lack of awareness of it which keeps people thinking it's "rare". Up to 8 million people in the US alone have RSD. I've not seen any stats worldwide but I would say that puts it in the double digit millions at the very least! Why can't someone get some real hard numbers out there like they do with cancer and MS, etc? Maybe one day.

Hugs,

Karen

I think because you can get RSD from an injury or surgical procedure, there are insurance companies involved. Maybe that's why. There's this sense of "blame".

Cancer is nobody's fault, MS isn't either, but RSD could be seen as someone's fault, it is a consequence of surgery or an injury, maybe that's why a lot of people are so "shy" around the condition.

Pretending it's not there won't make it go away!

I never thought of a "blame" angle. That might be part of it. It makes sense. Goodness knows we have blamed ourselves at some point after getting rsd. I completely agree with the pretending it's not there part. Now, if the rest of the world would catch up. LOL

Hugs,

Karen

In the US there are lots of organizations trying to get the word out, like:

RSDS.org
RSDHope.org
forgrace.org (Cynthia Toussaint)

At least RSD is taken seriously!!!

In Belgium, Europe, where I live, there's not even one organization that's really specialized in raising RSD awareness. Not one. Not anymore. There used to be a support group for RSD patients, but they did absolutely zilch about awareness. They had meetings and lectures, yes, for the patients who joined, but that was all. No press releases, no really serious efforts to get the word out, nothing. The founder had RSD, and didn't get the help she needed, so it caved after a while. I'm sure she did all she could, but it just wasn't enough.

I have joined a chronic pain group (for all kinds of conditions involving pain) and they are doing the best they can to include RSD, but I still think we need a strong group, a lobby group almost, to try and raise awareness.

I have a website up, and I have written to a bunch of politicians, even the prime minister with NO results. Absolutely no results. From most, I didn't even get a reply! In this day and age! I even happen to know there's a prominent politician out there in my country whose wife has RSD. She sure has done nothing to help out her fellow RSD patients. And fellow politicians sure aren't queueing up to help!

The most prominent university hospital in my country has departments with doctors who still don't "believe" in RSD. As far as I'm concerned, RSD patients in my country are in serious trouble if nothing changes fast.

I kind of look up to the situation in the US, at least there are articles being published in newspapers, articles that take RSD seriously.

I have no clue what's holding RSD awareness back where I live... but it sure isn't a normal situation. I mean with all that's going on and the lack of attention... I haven't come across one RSD article in the news here.

Can you imagine all the RSD patients going to have a check-up for SSD? There's no generalized protocol even there. You depend on the knowledge the doctor you happen to end up with has about the condition. Most are not knowledgeable!!! It's random and unfair. What if they did the same to MS patients? You'd soon hear about it!

I get so angry even thinking about this!