1. What is RSD?
2. Who or what is RSD Alert?
3. RSD UK Conference
4. Hyperbaric Oxygen Treatment
5. Pharmacist wanted
6. Your News
7. UK Self Help
8. Mailing List

1. What is RSD?
The popularity of our "Drugs" section has brought in many people who may not know about RSD, so let's explain what this is all about…
If you have pain you understand the most important thing about RSD. Now imagine that the pain is constant and extreme (like being scalded) and that the area around the pain is partially (sometimes totally) paralysed. Now imagine that there is no visible injury, nothing shows up on X-Rays, and some people (even some medical professionals) hint that you are making it up. So now you feel misunderstood and quite alone with your pain. If you can imagine that, you have some understanding of RSD.

For most RSD patients, the problem follows a small injury that has pretty well healed by the time the extreme pain breaks out. RSD has been a recognised medical condition for over 200 years but has still not been properly explained, although it has been given an official medical name - Complex Regional Pain Syndrome (CRPS). The initials "RSD" stand for Reflex Sympathetic Dystrophy, which is not a medically accurate description but is the most commonly used term for the condition.

If you don't have RSD, but have been helped by our website, please can we ask a favour? Please tell other people about RSD. The condition is not rare but, for most patients, the first time they hear about it is when they get RSD themselves. Please help us to spread awareness for the benefit of future sufferers.

2. Who or what is RSD Alert?
During 2003 the RSD Alert website welcomed 293,345 visitors - that's over 800 people a day on average. Some people looked at one page and went away; some spent much longer on the site and some contributed stories, comments, suggestions or information. With figures like that we sound pretty big. The reality is a Team of spare-time helpers spread around the word, with a small 'central office' in a private home in Bristol, England. The secret of our success is the thousand contributors and correspondents who make the site live… that means YOU! It is your stories, news and comments about Drugs, Treatments etc that make the site work.

RSD Alert does not seek subscriptions or financial contributions… why? Because we avoid doing things that cost money! We publish items on the web, but not on paper. We don't hold meetings, run publicity campaigns or fund research - and the reason we don't do those things is that we support other organisations that do. Our 'Help Groups' and 'links' pages drive traffic to many other RSD websites and bring in new members for other groups and campaigns. We want them all to succeed and we appreciate their efforts.

How can you help? Please just carry on doing what you're doing. Send in information, News and suggestions to keep the site up-to-date.And keep telling other people about RSD.

3. RSD UK Conference
My attendance at the 2003 Conference was a one-day trip organised at the last-minute. Apologies to any friends who I didn't get to see during my flying visit. It was another great success and marked significant steps forward on several issues. Most significant was an announcement about Hyperbaric Oxygen Treatment by Doug Meakin of the Multiple Sclerosis Society (see below) and the launch of the official charity RSD UK. To read more about the conference visit www.rsd-crps.co.uk.

4. Hyperbaric Oxygen Treatment
HBOT treatment has been scoring up significant successes for RSD sufferers and the 2003 RSD UK Conference saw a particularly striking example. Zoë Pearson, who was noticeable at the 2002 conference for her pitiful condition, curled up in a wheelchair. One year later, she was standing straight and proud, telling the Conference about her successful treatment. After trials with HBOT treatment, her family invested in a HBOT chamber of their own and had it installed at home (approximate cost £5,000). Regular 'dives' produced improvements that every delegate could see.

However, RSD patients who live in the UK have been offered another route to HBOT treatment. It has already proved itself to Multiple Sclerosis sufferers so successfully that the MS Society has set up 67 treatment centres of their own in the United Kingdom and Northern Ireland. Doug Meakin of the MS Society gave an impassioned presentation at the RSD UK Conference and announced that the MS Society has opened its centres to RSD patients.

5. Pharmacist wanted
We have a couple of experts as advisors to the RSD Alert team - and we need another one. Please, if you have current qualifications as a pharmacist, consider volunteering to help answer occasional questions. Our correspondence team answers enquiries from a steady stream of enquirers but, occasionally, they realise that expert help is needed. When people ask questions about particular drugs we sometimes need to ask our pharmaceuticals adviser - then we pass the information back to the enquirer. It is not a demanding task, but it is a vital part of the service we are offering. If you are suitably qualified and willing to help, please write to me - editor@rsdalert.co.uk.

7. Your News
We run a News page that changes frequently at times then stands still for several weeks, or sometimes even longer. It all depends how much you tell us and, if you have nothing to report, nor do we! The page can be found at www.rsdalert.co.uk/info/NEWS.htm and is there to bring News about developments in the RSD world, new support groups and websites, local enterprises and other events of interest to RSD patients, carers and healthcare professionals. If you have News to share, don't forget to drop us an email.

8. UK Self Help
Steve and Julie Garrill run a website to encourage chronic pain sufferers (not just RSD) and asked to be mentioned… We are happy to help. You can find their website at - www.ukselfhelp.info - www.ukindex.info

9. Mailing List
You received this Newsletter because you are on our Mailing List. You got on the list because you wrote to us, you signed our Guest Book, you submitted information on Drugs, Treatments etc, or we published your story. We do not share our Mailing List with anyone… it is confidential and is kept in only one place. If you prefer not to be on the list, please send a message to mail@rsdalert.co.uk with the Subject "Please remove". If you have received this Newsletter from someone else and want to be added to the list, please write to mail@rsdalert.co.uk with the Subject "Please add my name".

I wish all of you a happy Christmas and New Year.
Thanks for being involved. Be as pain-free as you can but, in any case, don't give up.

Derrick Phillips
(RSD Alert Editor)