Name :    Samantha Dumas

E-mail :

Adult:      19 years old

Location: Augusta, ME

Area(s) affected:  Right foot

Personal History:

Hello, my name is Samantha and I was diagnosed with Melorheostosis in July of 2008. I was born with an abnormal toe (one next to big toe) where it is smaller and thicker than the others (not as flexible).  I never thought anything of it until the summer of 2008, when I began to get what looked like a rash in between my deformed toe and my middle toe.  I thought it might have been athletes foot and I got medication for it but that wasn't the case.  It just made it worse. Over a period of a week it began to swell up so bad my foot became purple and I could not walk on it at all.

I went to the doctors and they had no idea what it was so they diagnosed me with an "allergic reaction." They gave me a certain type of steroid which made the swelling go down but didn't change the color of my foot (it was still purple).   After my prescription was over it began to swell again so I went to the doctors for the second time and this time they diagnosed me with celuitious. So, they gave me antibiotics and sent me on my way.  Nothing helped and it stayed swollen for another month or two, and finally the swelling went down but I still had unbearable pain in my foot.
I finally went back to the doctors for the third time and this time they gave me x-rays and found that I had Melorheostosis.  They said they had never heard of a case in Maine.  So finally I went to The Boston Children's Hospital and talked with Samantha Spencer, an Orthopedic Specialist, who really didn't know much about the disease as well as the doctors in Maine and said there was really nothing she could do.

So now I'm in what I call remission and it seems the pain and swelling of my foot has dulled down a lot and I rarely have pain or swelling (only when I'm on it for a long period of time).  So for now I'm in good hopes and I hope the best for everyone who has this! Best Wishes to ALL!!

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