Name : Sharon Parker-Jones

E-mail : 

 Adult:  61 years old

City, State:  Lake Worth, Florida

Areas of body affected:  Right hand, arm, shoulder and collar bone

Personal History:

I am a 61-year-old Caucasian female diagnosed with Melorheostosis in 1970.

At age 7, about 1950, I was evaluated regarding my right arm and hand which my parents had been noticing a significant change in since about age 3. There was no diagnosis at the time. It was suggested that I could have surgery after I was fully grown to possibly correct some of the deformity. I do not think I was experiencing pain at the time.

As I grew, it appeared to be only my right side. My arm grew crooked, causing it to not hang at my side normally like the left. My right thumb grew short and pressed against the hand, my wrist thick with not much flexion, and my right shoulder blade protruded. I was right handed but had to train myself to use the left for picking up things, throwing, etc. As a result I became ambidextrous. My hair and nails are thick and grow very fast. The nail on the left thumb has always been deformed.

I was, and still am, constantly noticed. People would say, “why do you hold your arm that way”? “Why do you peel an apple that way”? “you sure hold your pencil funny”, “why is your thumb so short”? “How did you injure your arm”?……it has been difficult explaining over and over again, so I will just try and camouflage or hide it in some way rather than go through the explanation again.

I was fortunate in having a family that encouraged me to accept the things I cannot change, change the things I can, and the wisdom to know the difference; so when my adulthood approached and I had to decide whether or not to have surgery, and I chose not to do it. I was not having any pain with it and I had managed to train myself to do things differently. I had already accepted the fact that playing sports or being a cheerleader or model was out of the question, and I was ok with that.

I married and had 3 children, which did not show any signs of it. I was relieved. Even though the doctor said it wasn’t hereditary I was still anxious about it. I was even more relieved that as they grew they didn’t develop any signs of it.

I saw a doctor for pain and stiffness in my right arm and shoulder in 1970 at the age of 30. I was also experiencing the arm going to sleep when I would get still and while driving. After taking x-rays he discussed them with me and pointed out the melting wax look on my bones and wanted to research more, as he had never seen the condition before. I agreed to have x-rays taken of my whole body. It was found in my right arm, hand, shoulder and collar bone area as well as my left shoulder and collar bone area. I went away with a prescription for an anti-flamatory until he could research the condition. I was later given the diagnosis of Melorheostosis, and that it is nothing lethal. It was so rare he told me that no treatment is available. He suggested that I have x-rays taken every 10 years to monitor for any change, which I have done and there is no change to date.

The doctor performed carpel tunnel surgery for the arm and hand falling asleep, and it has not done it again to this date. I gave him permission to take a piece of the bone while doing the surgery and have it tested. The results came back negative of anything like cancer, etc.

Once a year I get a bone density test. They always report to me that I have the bones of a 30-year-old and that I do not ever have to worry about developing osteoporosis.….that’s always good to hear.

I am in chronic pain constantly - my entire body, even though the x-rays show it to be only in my right arm, hand, both shoulders and collar bones. I have tried every anti-inflammatory there is, local injections, hot and cold packs, physical therapy, medrol paks, acupuncture, chiropractic and epidurals. I have had MRI’s from head to toe and nothing shows up as being wrong. Exercise worsens the pain, but I do walk and swim.

I am so glad I found this website. I hope my story might be of some help to others who have the condition and also to doctors. I have been to dozens of doctors over the years and none of them knew what it is. I would appreciate hearing about any clinical trials or anything new that might help the pain.

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