Name : Shawna Hatch

E-mail :

Adult:  29 years old

City, State:  Bountiful, Utah

Areas of body affected:  Right hand and fingers; right wrist, forearm, elbow; joints on right side of body

Personal history:

I was about 2 or 3 years old when you could start to see a deformity in my right hand. I saw a picture of myself and was shocked to see the deformity at such a young age. My parents took me to see Dr. Robert Lamb when I was 10 or 12, 1983 or 1985, thinking I had some type of cancer. This Dr. did not treat me, but did do full body x-rays, possibly an MRI - I don't recall. He diagnosed me with melorheostosis and referred me to Shriner's Hospital in Salt Lake City, Utah.  I was then seen by Dr. Sherman Coleman and he did a ligament repair on my right wrist/forearm because I fell on my deformed hand while roller-skating. A few years later, 1988, I had my middle finger straighten by Dr. Coleman's son, Dr. Don Coleman or Skip, also at Shriner's Hospital in Salt Lake City, Utah. This did not heal so I had a bone graft taken from my wrist and then with a metal plate in place it healed. This was in 1991 or 92.  After this surgery is when I started having trouble with daily activities. I was very active in sports and other things that I can't do today.  I can't play volleyball, basketball, softball, tennis, bowling (taught myself to bowl left handed!), waterskiing, and swimming is even difficult, cooking, cutting, writing, typing, should I go on? )  

After high school I really just dealt with the pain and cut back on a lot of the activities I was able to do. Pain relief came only with over the counter med's. Dr. Coleman said to come back if it bothered me. So, I waited until 1999 and, at my husband's request, saw Dr. Skip Coleman again, but not at Shriner's -- at the University of Utah Hospital. This was because I was now too old to get treatment at a children's hospital and part of the reason I waited so long to get treatment. This time it was not for my hand, but for my elbow. I was not able to straighten or bend my arm. It was like it was stuck at a 90 degree angle. I was having trouble lifting my 2 yr. old daughter and work was being compromised. I had to teach myself to do a lot of things with my left hand. Dr. Coleman suggested an elbow replacement, which was not an easy thing since it was still a very new procedure. I did it and am happy to say I have more movement in my elbow than before, but my wrist and hand are still the bigger issue. After my therapy was done for the elbow replacement, I once again went on dealing with the intense pain and increasing deformity and restricted movement in my hand. 

I just went back to Dr. Skip Coleman on April 2, 2003. I am having increased pain in my ring and pinky fingers, wrist and thumb joint. It is very intense and unbearable at times, so much that I cry myself to sleep at night. The slightest movement, bump, or even over-extension is very painful. Dr. Coleman has now suggested that I have two of my knuckles replaced to relieve some pain. There is no guarantee that I will have any more movement or any guarantee of pain relief. He also suggested some pain relievers for the bone, not joints, that take a lot of management to get the doses right as an alternative to surgery.  I don't know what to do. I just know I am tired of dealing with this pain and suffering.  After this visit I decided to search the web for info about this disease. I can't believe that I have stumbled on this website to find other's with this disease! I was told that this was a very rare disease and that I was one of two cases known in Utah.  Everywhere I go, I am constantly asked if I hurt my hand, broke it, if it is swollen, what's wrong with it. Without realizing it, I hide or protect my hand in everything I do.  It is very difficult to type for long periods of time. And I have a hard time more and more as this disease controls and limits my life.  So far, I am very delighted with this website and to finally find others who know how I feel and what I am going thru! I'm looking forward to information and friends I can gain thru this website. 

Very sincerely yours, 

Shawna Hatch

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