As a person living with scleromyxedema, I have created a website to share my experience with others living with this disease and to provide a forum/network of support.
I have been living with scleromyxedema for ten years, and as you may know, there is very little information about it, nor is there definitive treatment for it.
I would greatly appreciate it if you would share my website and contact information with anyone else who has this rare disease—which is often (mistakenly) thrown together with scleroderma—and who is looking for support.
07/23/09: Unfortunately, Phyllis' site at scleromyxedema.com is no longer active.
02/26/13: The domain was bought by Bonnie, who also has scleromyxedema.
|Phyllis K. Phillips
New email address needed 07-23-09 SLE
Old Web Site: Scleromyxedema.com
Story Artist: Shelley Ensz
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
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