Copy of email - did YOU receive it?
Fri, 2008-10-17 16:47
( I sent this email out recently but wonder if some people did not receive it. Please let me know if you did not......)
Greetings from a sunny South Africa, where we are spending some months in the Cape, avoiding the excesses of the Northern Hemisphere winter. The whales are back very close to shore, visible from our house as they flip their tails and even breach – an awesome sight when 60 foot long creatures behave like dolphins.
I have heard from several patients who have either been newly diagnosed or who have found the website while browsing. It has been heartening to hear from one lady who had Degos disease diagnosed 25 years ago, and who is perfectly well and healthy. Good news for all of us!
As always, I encourage people to post messages on the message board, and would ask you all to check there from time to time, as often they have questions which might be relevant to your experience. Take a look at http://www.degosdisease.com/messages/ and make your own comments and suggestions.
If anyone has meant to take part in the research but has not got round to it, let me reassure you; it involves only a small sample of blood, which you send to Germany by post (sounds odd, but it’s true!). If your close family members can do the same, all the better. Then you’d need a note to explain who goes where in the family (a simple family tree to show your relationships). There is a letter for your doctor on http://www.degosdisease.com/research/howtohelp which explains the procedure.
The questionnaire is self-explanatory, and it has given the researchers some valuable insights and leads to work on.
It would be wonderful to find out why we, of all the people in the world, have Degos disease. Any one of us might unlock the medical mystery, as long as the doctors have some facts to go on. Any copies of medical notes would be potentially useful to them, as often they can see what effects, if any, various treatments have had. So please speak to your medical advisers and encourage them to contact Professor Zouboulis or Dr Theodoridis (http://www.degosdisease.com/contact/doctors) – they are keen and interested, and they speak excellent English as well as German and Greek.
Please feel free to write – I will paste your responses on the message board unless you specifically ask me not to, as often the questions, comments and insights are of great interest to everyone. Also, I’d like some encouragement myself from time to time! I had my 65th birthday this August and it may not be too long before I will seriously be asking for someone else to be taking over this support network. I’ve been doing it now for over 10 years, so please........start thinking about it. If you would like to take it over, let me know. In fact, let everyone know – we should be sharing thoughts from now on.
I truly hope you are all well and leading happy and fruitful lives in spite of this disease which unites us all, wherever we are in the world.
With very best wishes
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