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This site exists to increase awareness of Reflex Sympathetic Dystrophy and to encourage those who already have RSD.

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RSD Alert Newsletter December 2002
Our last Newsletter went out in May, but that does not mean things have been quiet. RSD Alert grew steadily from January 2000 until the middle of this year, but the growth in visitor numbers since then has been anything but steady. In November 2001 we welcomed over 3,000 visitors and were delighted; in November 2002 our visitor numbers exceeded 23,000. I guess that means we are meeting a need.
These days we see fewer of the "really desperate" messages that used to be common, which could mean that more people are finding information about RSD before they get to "the end of their tether". Several recent messages tell of times, little more than 5 years ago, when it was extremely hard to find information about this disease. When I was first diagnosed, in early 1999, the Internet was beginning to feature RSD, but many of the pages were gloomy and depressing. How grateful I was to find RSD Hope (www.rsdhope.org) whose pages encouraged me to strive towards remission and, later, to publish the story that grew into this site (thanks Keith - and the rest of the Orsini family). Now, with a growing band of co-operating groups and websites, we are beginning to break through ignorance and raise the hopes of those who felt alone and un-cared-for.
Thanks to all those who work with us and to everyone who is working to raise awareness of RSD/CRPS and reduce its threat.
Featured in this Newsletter are...
  1. RSD UK Alliance
  2. New Zealand
  3. Guest Book
  4. RSD UK Conference
  5. RSD Alert Team
  6. Q&A
  7. Your News
  8. Mailing List
  9. Future

1. RSD UK Alliance
A large proportion of RSD Alert readers live outside the UK, but I guess you all know that our headquarters is in England. We are part of the RSD UK Alliance, which is an informal arrangement between key RSD/CRPS support groups and websites based in the UK. Alliance members seek to help and support one another by mutual recognition, by sharing non-confidential information and by pooling resources where possible. The Alliance co-operates with similar groups around the world and seeks to encourage new groups and ventures that share our aims. We want many more people to talk about RSD so it will become better recognised, researched and understood.

2. New Zealand
Closely linked with the RSD UK Alliance and RSD Alert is the first New Zealand based RSD Support Group. Wendy Everitt, a member of the RSD Alert Team, lives near Wellington, NZ and is the leading light in the formation of this new group. Visit their new website at http://groups.yahoo.com/group/rsdcrps-nz and, if you are in New Zealand, why not join them?

3. Guest Book
Running to more than 40 pages, our Guest Book carries personal comments and messages from RSD patients and carers across the world. Time does not allow us to send individual responses to everyone who signs the "book" but many are seeking correspondence with fellow sufferers. The Guest Book is not actually on the RSD Alert website, but is hosted on Lycos and is seamlessly linked, so you can move freely from our website to the Guest Book and back again. The entries are sometimes heart-warming and sometimes heart-rending entries, but well worth a look. To view the RSD Alert Guest Book go to - http://titan.guestworld.com/wgb/wgbview.dbm?owner=phillips_derrick_2

4. RSD UK Conference
I was privileged both to attend this year's national conference in September and to give the opening address and it was an encouraging experience. The 125 attendees included many who had struggled to get to the venue (I have never seen so many wheelchairs and crutches in one hotel) but everyone seemed to benefit. Among the presentations were hopeful signs that RSD/CRPS is moving up the agenda for scientific research. Several relevant projects have been granted funding and are looking into the causes, and possible improved treatments for this painful condition. Meanwhile, the strength of combined efforts is pushing forward the awareness campaign and encouraging more people to spread information.

Many thanks to Catherine Taylor and Barry Swallow (of http://www.rsd-crps.co.uk) for organising this excellent 2-day event, which also gave plenty of time for patients to swap tips and form new friendships.

5. RSD Alert Team
With our huge visitor numbers I could have been buried under the workload by now. However, we have a first class Team of correspondents and advisers who share the workload, so we have coped with the growth. Remember, that RSD Alert is run by volunteers, most of whom also have full-time jobs, while some have their own burden of pain to bear day-by-day. Their willing help makes this work possible and I am very grateful. We have had some recent changes to the Team and I particularly want to thank Kristy, who was a great help but had to leave us recently because of the way her own condition is developing. Many thanks to all those who keep this website going and take the time to answer correspondence from visitors.

6. Q&A
Questions & Answers is a new section on RSD Alert that grew out of a particular stream of correspondence. Louise, a USA based massage therapist, has had her story on the site for some time, but we were receiving increasing amounts of correspondence for her. With her co-operation, we have now set up a section specifically for Questions & Answers on specialist subjects at http://www.rsdalert.co.uk/QA/index.html . Right now, the only subject listed is Massage Therapy, Louise's specialism - and there are several interesting Q&As to read on the subject. In the future we expect more subjects and specialisms (any ideas?).

7. Your News
We run a News page that changes frequently at times then stands still for several weeks. It all depends how much you tell us. The page can be found at http://www.rsdalert.co.uk/info/NEWS.htm and carries News about interesting developments, 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. 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".

9. Future
RSD Alert is run by volunteers in their spare time, but has become a prominent force in the campaign for RSD Awareness. There have been times when it was hard to keep up with the work, but more volunteers came forward and we were able to continue. We will remain a volunteer enterprise, working under the banner of the RSD UK Alliance. We aim to keep our work low-cost, so that we do not need to seek funding... which is why we don't provide telephone support or send information by post. But, within those constraints, we are open to suggestions. If you have ideas for improving the information and service we provide, please pass them on via our Team contact page http://www.rsdalert.co.uk/team/index.htm

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)
www.rsdalert.co.uk
for correspondence click CONTACT