Name :  Alaina K.

E-mail :

Adult:    23 years old

Location:  Charleston, South Carolina

Areas affected:  Left hand and wrist

Personal History:

My name is Alaina. I am 23 years old, and currently reside in Charleston, South Carolina. I have recently been diagnosed with melorheostosis in my left hand (4-5 digit) and wrist. I have had some pain and swelling in my left hand for some time now and have been seen by many doctors in the past. I was told at first that it was just a tumor, yet when the pain got worse I was sent to a rheumatologist. This doctor told me that it was just a cyst. Following this diagnosis my original doctor sent me to a neurologist. He said that he did not know what it was but that I have some nerve damage to my finger tips and wrist due to the abnormality to my hand. Finally my husband and I moved to S.C. due to his job, where my current doctor looked into my hand abnormality and x-rays and today diagnosed me with this rare bone disease.

My doctor also referred me to this website. I am currently waiting to see a hand specialist my doctor has referred me to. I have pain and stiffness in my fingers and wrist. I often have little or no feeling in my finger tips. He has given me an anti-inflammatory but says there is little more he can do.

I would love any additional information anyone could send me on this disease or things they have found that eases the pain. Thank you.


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