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Justin Suchan is my 19 year old son who was born with Melorheostosis, but wasn't diagnosed until he was 6 months old. Justin is currently an out-patient of Shriner's hospital in Sacramento, CA where he has been treated for it since his diagnosis. Because of the effects of the disease on Justin's skin and bone tissues in his left leg, the limb was amputated when he was only 4 yrs. old. At the time of his diagnosis (age 6 mos.) the University of Calif. medical staff told us that he was at that time only about the 5th child that they knew of with it in the world. There were probably more that hadn't been documented yet. Before the amputation was performed, Justin was the subject of many medical conferences, where doctors were flown in from all over the world to view him. This was at the insistence at first, of a dermatologist named Dr. Denny Tuffinelli who is an expert in the field of a skin disease called Scleroderma. Dr. Tuffinelli was part of a team of different physicians, which it eventually took together to make this difficult diagnosis. Some of the first symptoms that were visible of Justin's were hard patches of skin that contracted and crippled him on his left leg between his knee and ankle. These skin and tissue involvements were very similar to Scleroderma, which Dr. Tuffinelli has done much research with. A biopsy later revealed that it wasn't Scleroderma, but Melorheostosis. Justin has been treated regularly as an out-patient of Shriner's Hospital, where an amputation of his left leg was deemed necessary to relieve pain and the crippling effects of the skin and bone when he was 4 yrs. old. The amputation was a "through-the-knee" disarticulation. Justin currently walks with a prosthesis. The skin on his stump is extremely sensitive, and easily agitated which because he is "end-bearing" often causes many blisters and if he walks to much can cause him much pain and soreness. Shriner's Hospital is currently in Sacramento,CA. after its move from S.F. ,CA. I am Justin's mom, my name is Peggy Suchan.

Justin continues to experience pain in his hips and joints and soreness when he walks with his prosthesis for any lengthy considerable time. He has become a self-taught musician and he loves playing guitar ALL of the time, but standing and not sitting causes much discomfort. After reading many of the personal histories from this site, I have come to a conclusion that I know that MOST of the other patients of this disease will not want to hear or maybe even consider...It is very obvious to me that even though most every area of Justin's skeleton that can be seen affected may be causing him pain sometimes....It was a VERY good choice of the doctors at Shriner's Hospital to remove the main affected limb (his left leg through the knee) and allow Justin to learn to walk with his prosthesis as normal as possible while he was young.....I can only imagine the larger extent of suffering that he would have endured had they not done so....I read the histories that include numerous surgeries and endless hours, days and months of physical therapy that failed miserably... I wonder if the affected limbs had been removed if some of these patients would have been better able to accomplish more and better things in their lives and certainly not have had to endure as much pain as some seem to express in their histories... I wish better things for all.

God Bless, Peggy Suchan