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#1 travelgirl-M



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Posted 10 August 2007 - 04:14 PM

I am doing a project on my mother's disease for my senior thesis. Spreading awareness about Scleroderma. I have lots of research but I still need more medical perspectives, stories, treatment and international idea's, treatments, research. I chose to do my project on this because I am tired of people thinking that it is not that important for people to know about when knowledge is our best weapon against this terminal illness.

Thanks Michelle

#2 epasen


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Posted 10 August 2007 - 08:47 PM

Hei travelgirl-M,
this sounds great <: Keep on doing your good work!

#3 jefa


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Posted 10 August 2007 - 08:48 PM

Hello, Michelle, and welcome to the ISN Sclero Forums. An excellent and thoughtful choice for your thesis. You have certainly found the best collection of information on scleroderma contained in one place. I would suggest starting in the Medical page in the tab above and also the Support page, where there are links to many personal stories which will give you patient and caregiver perspectives. Last (but certainly not least) is the forum itself. Browse through or use the search function for specifics. Good luck with your thesis. Once you get into the research, I hope you will come to understand that scleroderma does not have to be a terminal disease.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 WestCoast1


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Posted 10 August 2007 - 10:00 PM

Scleroderma is a very important subject to devote your project to. Two thumbs up!! Jefa gave you some great links, and please ask questions for whatever else you may need to know.


#5 nan


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Posted 11 August 2007 - 04:07 AM

Thank you. If you want information on my journey with scleroderma you can private message or email me. Good Luck!

#6 janey


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Posted 11 August 2007 - 05:00 AM

What a wonderful idea! Thank you! Jefa has provided a couple of great links with tons of information. On the support page you will find a link to hundreds of personal stories written by people with scleroderma. If you are looking for something specific, please use the search box and you'll get a more concise list of pages as well as stories with the specific information you're looking for. If you can't find what you're looking for, please ask. Someone here will direct you to that information or provide the answer.

Again, thank you so much for making this your senior thesis. Although I know it shouldn't, it still amazes me the looks I get when I tell people I have scleroderma.

Big Hugs to you and your mother,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)