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Phyllis Phillips: Scleromyxedema

Scleromyxedema is a scleroderma-like condition. However, it causes thickening and hardening that makes the skin look too ample, rather than too tight, as in scleroderma. It is also referred to as Scleromyxedema of Groton, lichen myxedematosus, and papular mucinosis.

Parakeets for Phyllis by Shelley Ensz 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.

Webmaster's Note

07/23/09: Unfortunately, Phyllis' site at is no longer active.

Webmaster's Note

02/26/13: The domain was bought by Bonnie, who also has scleromyxedema.

04/12/18: The domain is no longer active.

To Contact the Author

Phyllis K. Phillips
New email address needed 07-23-09 SLE
Old Web Site:

Story Artist: Shelley Ensz
Go to Pieranna: Daughter of Mother with Sjögren's Syndrome

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