Name : Mckenna Sullivan
E-mail : robsgirl1975@aol.com
Age: 26 years old
City and state: Shelton, Washington
Areas of body affected: Whole body except skull and face bones
Personal History:
I have had melorheostosis all my life. We just didn't know it until I was 19 years old. The first diagnosis we ever got for my condition (which only affected my left hand and arm) was "the Sally Hicks Disease" as that was the name I was born with. I had six surgeries for the "Sally Hicks Disease," including putting pins in my fingers to straighten them and surgeries to lengthen the tendons in my wrist so it would remain straight. I had my left ring finger removed when I was 8 yrs old. When I was 10 it started spreading to the rest of my body, but it was only noticeable in my left leg and foot. The doctors didn't know what to do, after all there was supposedly no one else like me in the entire world. So for years my mother fought with doctors to keep them looking for things to do for me. By the time I was 17 I could hardly use my left leg. The heel chord shrank to the point that walking was incredibly difficult. I sprained my ankle numerous time because either my foot wasn't stable enough or I would lose feeling in it. So after a particularly bad sprain, we went to the doctor. She said that she knew what I had and it wasn't just "my disease," it was a rare form of C.P. (Cerebral Paulsey). And all I needed to do was have a heel chord extension surgery on my left leg (of all the surgeries I had, that was the worst one). So I had the surgery and for a few years I considered it a success. But then we noticed my C.P. spreading into my right heel chord. We went back to the doctors and they said that C.P. doesn't get worse. So they sent me to the genetics lab at Children's Hospital in Seattle to see what was causing this. On March 17, 1994 I was diagnosed with melorheostosis. They said that I was only the 301st documented case in the world and that I would probably end up in a wheel chair by the time I turn 40 (I plan to go dancing on my 41st birthday). But they also said they were optimistic about helping me. They have been doing experimenting with a hypertension drug called procardia to slow down the progression of the disease. I was part of the experiment and I must say it worked. While I was taking it, the bone streaks (as I like to call them) didn't get any worse. I didn't even develop new ones! But I had to stop taking it because it made my blood pressure drop too far.
Now I have almost constant pain to some degree, mainly in my legs, feet and back (when my feet aren't numb). But I have been given a tens unit to stimulate the nerves in my feet and that helps with some of the pain and numbness. I have been in and out of a wheel chair over the years, just because it hurts to move. And fighting pain all the time is hard work. But I won't take any of the medications they want to give me for it because I have a 4 year old son who needs me. As for whether or not I end up in a wheel-chair, I'll post an update on my 41st birthday.
I have not yet met anyone with melorheostosis but would like to do so very much. It feels so good to know this isn't just "my" disease anymore.