Why don't we make Mon 14th April International RSD?CRPS e-mail Awareness Day.
Everyone emails their President/Prime Minister, National and local politician.
The day before your national and Local papers asking them to print them.
If you are up for this and willing to spread it on other forums/websites please sign below

Sounds great Kev! How about a sample of such a letter?
Or maybe we could get permission from RSDHope organization
to use something they have?

If we get enough interest I was going to ask Brambledog to do one. She's much better with words than me

Why of course I will Kevin always nice to have ones skills appreciated lol!

Bram.

The trouble is getting sufferers to actually do anything to help themselves. 95 views how many sign ups.

"The trouble is getting sufferers to actually do anything to help themselves. 95 views how many sign ups."

A lot of people with CRPS are doing a huge amount to help themselves every day. They may just not be doing what you want them to do!

November has already been proposed and used in previous years as RSD/CRPS awareness month by a few groups in the USA. 14 April often falls within Easter school holidays (always in Scotland where the 2 week Easter school break is fixed regardless of when Easter falls). A date when many people are on holiday may not be the most effective timing.

I wonder if you have heard of Rare Disease UK? Its a relatively new organisation dedicated to raising awareness and obtaining better treatment for those with rare diseases which would include CRPS. They have done a huge amount of very effective work in a relatively short time including lobbying and influencing MPs. They have an annual Rare Disease Day in February for which they already provide a whole suite of logos, banners, posters, template letters etc, etc all of which is very impressive and is available in multiple formats to download and use. It is suitable for customising for specific conditions within the remit of rare Disease UK. It would be worth looking at their website and seeing what they already do.

Perhaps integrating your idea for CRPS awareness into Rare Disease Day would be a more effective way to achieve the sort of outcome you are looking for and someone else is doing all of the massive amount of work to provide the necessary materials. People can run their own activities as part of Rare Disease Day or link into one of their organised activities.

I think you also have to accept that not everyone with CRPS wants to be involved in awareness raising or communicating with their MP. Other people may not agree with the particular message you are putting across or might not agree with some of the things you are saying. There will be many people who are just too unwell to get involved and others whose CRPS symptoms are minor so they won't identify with what you are trying to do. You have chosen to undertake these political awareness activities presumably because you feel that they are the right way for you feel you can make a difference but other people may not share that view or they may be approaching awareness raising in different ways. I'm not criticising, just trying to explain why you can't expect everyone to want to do the same political awareness type things that you want to.

Well said Neurochic

I think that you just hit the nail on the head. Another thing is that some people just don't, at this point, have anything (or know what) to say. While I've struggled for 5 years hunting down a diagnosis, it has been mere weeks that I've had a name for what is wrong with me. I'm still trying to figure out the ups, downs, heads and tails of this for me.

On top of that, I decided a week after my doctor told me CRPS to manage to whack my hand on my bad arm with a hammer. Now I'm losing the use of my hand, and where my arm was a pilot light to my leg's bonfire, my arm is now an out of control wildfire. Plus I'm trying to get my house ready and prepared for me because I have surgery scheduled in 1 1/2 weeks.

This may not be the only serious, life altering disease some of us have also. I was diagnosed with celiac 2 years ago. I'm very active in celiac communities providing the support to new people that I needed when I was new. I also spend a lot of time reading up on new research. (I have a whole new understanding of medical terminology from medical papers.) And I've spent time writing letters and emails to politicians and even the pope to try to change the world.

It took more than a year for me to feel I understood my celiac well enough to be an advocate. It isn't that I, or others, may not want to do something like this. A lot of people just may not feel ready besides all of Neurochic's good points.

Neirochic "A lot of people with CRPS are doing a huge amount to help themselves every day."
and that's it they are unwilling to help outsiders.
I posted on here about National Awareness month in 11 or 12 and 80% of Americans had never heard of it let alone knew what month.
Had a look at Rare Disease and will contact them but 1 day a year is not going to make a difference.

This has just been posted on facebook, shows why we all need to work together because obviously they are one of the 80%







RSD/CRPS Research and Developements

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Member Hailey Nicole writes:

Hello my name is Hailey I am 21 when I was 12 I was diagnosed with crps/rsds. When I was 14 I started a health awareness bill and spoke in front of ohio state senate congress House of Representatives and so forth and finally a year ago my bill was passed in ohio and feb is crps awareness month in Ohio
If you need any help at all getting awareness out in your state or any help at all please message me I also help push young kids who are diagnosed an don't wanna move cuz it hurts move it I have helped lots of children out of their flare ups.