WE do not have cancer. WE do not die from this... Unless you count emotionally. WE sit alone, emotionally dead to the world, trying to deal with our pain on our own. RSD

Just because we dont die from RSD doesnt mean we shouldnt be considered when it comes to medical research. Just because we dont have cancer doesnt mean we arent affected by this disorder, this dystrophy.

The fact is that we just cant sit around waiting for a cure for cancer then waiting for 'them' to start researching RSD.

Cancer is just uncontrolled mitosis. RSD is still an enigma because every case is different. Not different by the pain we feel but by the way we get RSD, the way we are treated for RSD, and the way people react to RSD. Some people act like they care when in actuality they dont. Some people actually do care. Thats just how things are.

Today you see shows on tv about tourette's or parkinsons, or cancer for that matter, but you dont see RSD do you? More and more people have RSD and yet no one knows about it? How are we supposed to be recognized if no one even knows what RSD is or how it affects us?

I'm not saying that all of us need to be on tv but why not some of us? We could tell our stories, and try to help others like us by getting the awareness up. If RSD was as well known as cancer, new treatments would be popping up every year! Maybe then we could find some relief...

Why go UNNOTICED?

Hi Snowboarder13,

My daughter is 16 years old and has RSD, She has undergone Ketamine infusions with great results. I understand your frustrations and I read in one of your posts that you are 17 years old. Here is a way that you can get the word out. Take a moment to email Oprah, the Doctors on NBC, and other daytime shows. Send them your intro, explain what RSD is, tell them what you have told us. How this disease has robbed you of your young life, there are many young teenagers on this board and together you should write and let them know. They may listen to you, you are a child, I know you are 17 but you have more clout than adults when it comes to illness. There was someone on facebook, I believe she tried to get everyone to email Oprah on one day in July, with some success, I know there is an old post on neuro talks that asked everyone to email Oprah, maybe someone here can remember who it was that had the original post.

Remember Snowboard13, you are your own voice, this is your disease,
let them know...I have faith in you!

I am sure that we all can help, get it started. Good Luck.

Sandy

One thing I would suggest is writing a story about RSD for your local paper also. Our paper has had several articles in it about people with RSD and what they have gone through.

I have often wondered if anyone knew how much if any money is going to research. There are so many RSD groups out there and the money is being split into groups by having so many. I often wonder why people start all of these groups instead of one big one where the donations can be kept up with. It's not just RSD, it's cancer and other things. I do know we have the RSDSA, which is one of the biggest ones.

Too, I would think writing to the Politicians might help get the RSD out there.

Sorry to hear what you have been through. I have 2 Grandson's that is into sports and everything else going and I often worry about them ending up with RSD. I hate to see all of the young people on here going through this.
I do hope you can get to where you can enjoy growing up and having fun with other teens.

Ada

Welcome to our forum Snowboarder,

There are many things that can be done to get out and take action, to affect change and bring attention to our cause. It's not easy for many of us to step up to the plate so to speak because of our individual medical situations. That's one reason I support the RSDSA.org organization, they do good work and bring attention to RSD on our behalf. I posted their link on my facebook page to help to spread the word that way.

I know that it can seem like no one is interested in helping to find a cure for our disease. There is still so much that is not understood and research can be slow and daunting in it's progress. RSD/CRPS may not be the sexiest disease to research, it doesn't attract the big dollars or accolades, but it has drawn the attention of some very dedicated doctors and researcher world wide. Just yesterday I received an email from Medifocus with a list of 18 CRPS/RSD abstracts published on PubMed recently. Many of the abstracts have been posted here on other threads, some are new for me. Here is the list below.

This is just a list of recent publications, there is much more research going on.

While we may not have the same attention and funding like other diseases such as cancer or MS I don't think we are going unnoticed. There is hope and it's up to each of us all to get involved in any way we can.

MsL

Sounds good right?! To e-mail Oprah, Dr. Oz, Dr. Show ..well I have done it several times... I even joined in the day we all committed to e-mailing together... No answer.. I think it is a "thing"... there is a reason why we get zero response and part me thinks it is because RSD is not a happy, shetchy.. disease with negative publicty... what I mean is that there is not a happy ending to present....I have given up as it falls on deaf ears...

Something to point out to these people (Oprah, Oz, etc. Politicians), is the Toll in Dollars, that RSD takes.
Cancer, has an expense to treat, and many of those folks can go back to work, or, sadly they pass. Not a whole lot of in between.

RSD, is all the things we know, but it's also financially devastating to All! (the politicians oughto take notice), especially now with this Health care changes coming down. (No Caps! say 1 million).

RSD is a worldwide problem, just like Cancer.
True, it's won't kill us.
But, one thing it can do, is kill us financially. Then we become dependents, (and we spread the famine) unless we planned very well!

pete

I can't help but believe this condition is mostly preventable. It often starts after noxious events that are treated medically. It should not be beyond current technology to build a device that would show the heightened nerve activity associated with onset of RSD. They could just keep you there or administer sedatives of some sort until you return to normal.

Perhaps they'll never cure it but there's no aopparent reason not to stop most cases cold.

This post is a powerful one, indeed. You hit the nail on the head. When I tell people that I have RSD they ask a million questions, but I can only give them answers to my diagnosis and my illness that caused the RSD. I am almost at my 2 year battle and still no one can give me answers. "It's not severe enough, you look normal, you have to try this drug or that drug, you have to have a spinal lumbar block, this pain killer, that pain killer, the reactions to the drugs that make me soooo sick, yadda,yadda,yadda....the stress of just trying to get the right doctor who will listen is enough to put me over the edge sometimes. IF I am ever normal, and IF I find the right treatment, it will be the happiest day of my life. So far I have not choosen the spinal lumbar block because I have Cerebral Palsy, pretty mild, but the RSD is in my "strong" leg and spreading. A block could possibly cause me to be paralized for life, so I am learning to deal with it. I am living with RSD and some days I wish it would quit living with me......

Thanks for everything you all have said. I agree completly. I have a lot to think about now as to what I can do to get this out there.

Can you imagine what it was like for those who went before us? In my country, they used to stick patients like us in the psych ward, and some doctors still want to try and do this. In this day and age.

Think of the patients diagnosed at the turn of the century, in the twenties, thirties, forties, fifties, sixties, seventies, eighties. There are some who were diagnosed in the eighties on this board.

I was diagnosed in the nineties; I've been living with this monster for slightly over 14 years now and not that much has changed. There are still patients out there who get diagnosed far too late. It takes a movement to change this. In my country we don't even have a support group dedicated solely to awareness for *this* condition. None! We used to have one, but the lady who ran it has RSD herself and it has become too much for her.

I thought things were going to improve and have done my best to try and get people to open up, by not shutting up about it myself, hoping others would share their story too, but as long as the atmosphere in my country doesn't change, it's not going to improve. People are just not talking about it openly. They're ashamed. They're scared. All because of the way we are being treated, as lepers. All of this doesn't promote early detection (which is the only way to try and stop this) and treatment and or the recognition of one's disability.

I do, I do feel like an outcast most of the time. A lot of diseases get prompt attention and RSD just doesn't. It is getting to be discriminating, esp. after all these years and when you see what is happening internationally: far far far more. At least, there's a certain level of respect there.

I have had to struggle for almost three years, in pain, years without treatment or medication, before doctors noticed my RSD. That means that more could be done. I am not complaining about my medical treatment at all, once I was diagnosed all that could be done was done, there is nothing to complain about.

It's just that I think there is a general need for separate recognition of this condition. People have told me of their own suffering before being diagnosed and their troubles from one doctor to the next (one recognizes it, one doesn't, one doesn't, one does and this goes on and on, one would be better flipping a coin) and that to me says there is an urgent need for this.

These days, due to my own frustration, I am almost repulsed by nationwide cancer campaigns. Not nice, but that's the way I feel. When is the focus going to shift to MS, Fibro, RSD? Because that is necessary too, maybe even more so, because those are non terminal diseases and the hope of finding a cure within someone's lifespan besides being essential, might be more realistic!