It's amazing how I'm hearing this word Scleroderma. When I was first diagnosed with it almost 26 years ago, it was not a known word, or even a known disease for that matter.
Here's my story on Scleroderma... Not much to remember as far as pain goes, since I was only 5 years old when I was diagnosed with it. I barely remember all the times I spent in the hospital for weeks, month after month. Until I grew up, I had no idea what my parents went through...
At the age of 5 I was learning how to ride my bike out in the back alley- way of where we lived. Riding freely with no worries or cares, I hit a pile of little pebbles, fell, and slid a short distance. My mom cleaned me up, finding no major "emergency".
Days later, all my sores healed except for one. One on my ankle. Didn't seem to be infected, it just was not going away. Soon after that discovery, I could no longer put my heel flat on the ground. Always standing on my tip-toes. Mom took me to the doctor, and in everyone's bewilderment, I was sent to doctor after doctor, and finally to a Pediatrician Residing at Children's Hospital of LA.
By this time my left leg was deteriorating rapidly and I could not straighten it. It was bent so much that I could not even walk. It was as if my leg was in the "sitting" position from a chair. I had some exploratory surgery done, and no answers to anyone's questions came out of that. The skin, rigid and hard, and discoloration prominent, my ankle was immobile and my toes were so shriveled up that pain was inevitable. I was then diagnosed with Scleroderma.
The doctor at the time suggested amputation at the knee, to prevent spreading of this disease. My parents, not being satisfied with that answer, sought out for other professional opinions. It only took that one doctor to say something with even the smallest positive result, to encourage my parents in that direction.
Years of casting my lower leg, and straightening it before every casting, finally got to where I could straighten it on my own, and no longer needed the casts to keep it in that position. Wheelchair, crutches, I've used them both most of my child hood. However, I did have a normal school education at a public and private school.
I went through years of Physical Therapy after being in a cast, to try to build up strength in that limb.
I still have no mobility in my ankle, and doctors say that those bones are fused together and nothing will correct that. Imagine walking without moving your ankle. My toes are still bent and have pain once and a while. The scaring and the profound discoloration and extreme shrinkage of that leg leaves me with about a 2 inch difference in length.
Very hard to find shoes, as I have to buy two pair, just to wear one. I wear a size 5 on one foot, and a size 8 on the other. I am VERY self conscience about it and will not wear shorts, sandals or anything to show the difference in my legs. I've had reconstructive surgery with implants on my hip an buttocks in order to try to hide the defect. After 3 attempts, and 3 failures, I'm living with what I have.
Quite often, I wish I did have amputation though, so it would be obvious to the public and with an artifical leg it would at least be close to the same size and color as my other one. Walking around in the Summer with pants on, sometimes draws more attention to me, but I would never want to humiliate family or friends by having to be seen with me the way my leg looks.
However, everyone is VERY supportive, it's just the outlook I have on it, that I don't think will ever go away. It did affect other areas from my waist down, including my organs. However, thankfully, the hardness and rigidness did not set in, but the size of my ovaries and kidney are smaller. So having kids was going to be rough; so the doctors told me.
I have 2 healthy boys, and no problem with labor or delivery. However, I did have problems thereafter and have since had to have a complete hysterectomy. It's now just my self-conscience I have to be rid of. Fortunately by the time I was 6, the disease had stop spreading and has only limited the use of my left leg. I don't let that stop me from having a full productive fun life with my children though. Just recently, my kids have taught me how to skip.
I just wish I had enough confidence in myself to walk around in life without being afraid of what other people would do, say, or think. I thank God for my parents who kept up the fight for me and took me to every doctor they came across, until they found the answer they wanted.
I realize I don't have the serious, terminal type of Scleroderma, but the way I treat it...is!
Please, if anyone has any information on where to buy special made shoes (which I have to wear heals for work), will greatly be appreciated.
Thank you for reading.
Kim Paniagua-Rollins
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Copyright © 1997 Kim Paniagua-Rollins