Happy New Year - 2002 - from RSD Alert

In this Newsletter...

1. RSD is not rare
2. RSD UK Conference 2002
3. Changes to RSD Alert website
4. Are you in a Support Group?
5. Bad links on RSD Alert
6. RSD Alert Pen-Partners
7. Thanks and congratulations

Floods, earthquakes, the World Trade Center, wars, foot-and-mouth disease, stock-market problems… the past year produced a good many tragedies to feed the news media. But, while all this was going on, many of you suffered pain that was neither reported nor understood. We still have a long way to go to raise awareness of RSD in the public mind, or even among healthcare professionals. Nevertheless, we made significant progress together during 2001. Many more RSD Support Groups and websites were launched, there was increasing contact and co-operation between the various groups, and the year was crowned with November's successful RSD Awareness Week.

1. RSD is not rare
The RSD Alert website received over 24,000 hits during the year, of which more than half were first time visits. If just half of those people actually have RSD, that adds up to a great deal of pain and gives the lie to those who view this condition as a rarity. RSD Alert, remember, is just one among many websites covering this subject. During 2001, we welcomed visitors from Australia, Canada, Finland, Germany, Holland, Italy, Japan, Mexico, Sweden, the UK and most states of the USA… this condition affects the world! Thanks to everyone who wrote in, adding useful information, contributing stories and maintaining friendly correspondence. Thanks especially to those who helped respond to some of the anxious messages received through the site.

2. RSD UK Conference 2002
I enjoyed meeting some of you at the Eastbourne conference last May and again at an RSD_UK Group social in August. If you don't already know, the RSD/CRPS 2002 UK Conference is planned for the first weekend in May in Leeds. Up-to-date details of the conference plans will be published at - http://www.rsd-crps.co.uk/conference.htm - and I hope to see many of you there.

3. Changes to RSD Alert website
For those who haven't visited the website during the past few weeks, it's time to take a look at our new tabbed Home Page layout. It wasn't changed for mere visual effect, but to improve access to the mass of new material on the site. Forty separate stories are now featured in our Stories section and on Storyboard (http://www.rsdalert.co.uk/storyboard/ ) and each one brings a different personal angle to help expand our understanding of RSD/CRPS. Drugs on RSD Alert (http://www/rsdalert.co.uk/drugs/ ) has become very popular and now has 81 entries, including the most unexpected 'new-comer' - Thalidomide. Treatments on RSD Alert (http://www/rsdalert.co.uk/treatments/ ) now has 20 entries covering non-drug treatments. Let us know about drugs or other treatments that you have found helpful (or problematic).

4. Are you in a Support Group?
I particularly want to draw attention to the Help-Groups information (best found via http://www.rsdalert.co.uk/index4.htm). Loneliness is the second biggest problem for RSD patients (after the pain) and a Support Group can be a great boon, whether through face-to-face meetings or via email or in 'chatrooms'. I am a member of RSD_UK Group (http://groups.yahoo.com/group/RSD_UK) but have regular contact with a good many groups in other parts of the world.

5. Bad links on RSD Alert
Many thanks to those who alerted me to some bad links on the site and apologies to everyone who was affected. Some of the RSD Alert index pages are created by indexing software written by a student, whose input was acknowledged by providing links back to his website. Unfortunately, a porn site snapped up his domain name when it came up for renewal, and it was several weeks before I found out what had happened.

6. RSD Alert Pen-Partners
Thanks again to all those who helped with correspondence during the past year. However, this has been done on an ad hoc basis so far and I would like to formalise the arrangements. I have responded to all the correspondence (so far) but I can't always provide the answers people want. For instance, I don't know the facilities available in your area; I don't have personal experience of all the drugs and treatments; I don't know what it feels like to have restricted mobility. I am asking for volunteers to be "RSD Alert Partners" and allow me to refer contacts to them where relevant. The job involves responding to correspondents, giving encouragement, and pointing them to relevant help and information (e.g. Support Groups, information on RSD Alert or another website). I will not give out your email address but, by registering your willingness, you will be giving me permission to forward relevant emails for response. If you are willing to do this, please email me with a brief reminder of where you live and your personal experience of living with RSD.

7. Thanks and congratulations
Many thanks to all of you for your friendship, for your support, and for your encouragement during the past year. And congratulations to you for your bravery and determination not to allow this condition to control your life. Whether you are a patient or a carer - WELL DONE - and I wish you all a Happy New Year.

Derrick Phillips