Name : Samantha Dumas
E-mail : rickmklaft@roadrunner.com
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!!