This is the most active Internet support group for people suffering from the rare disease called scleromyxedema. Here you can talk to others suffering from this disease and their loved ones. You will also find photos of people with this disease, personal stories, and the latest medical articles.
my name is Bonnie, and I have a rare disease called Scleromyxedema. As far as I know there aren't any active support groups where people with this disease can go for support or information. I feel strongly that, because Scleromyxedema is so rare, those of us with it need to stick together and keep each other informed of any new studies or treatments. If you or a family member suffer from Scleromyxedema please join this this group and maybe together we will all learn to understand this disease.
For more about my story and information on Scleromyxedema visit our home page here
We now also have a Facebook Support Group that can be found here.