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.
Hi,
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.
Here are some before and after photos of me:
Before I started my IVIG treatments my skin was so thick that my face looked twice as fat as it does now. I have not lost weight since I started receiving IVIG, in fact, I have gained, so my face looks thinner in the 'after' photo because my skin has softened. My face was also very red pre-treatments. I looked sun-burned even though I hadn't been in the sun. I also developed deep lines around my mouth which are much less noticeable now.