Around age 3 or 4, I spent some time in the hospital for an intestinal infection, and immediately afterwards, the scarring began. It started at my right hand, and progressed on the skin up my arm, on my right waist, to my thigh, then above the knee.
As it moved down my body, the tendons on my right wrist/forearm started tightening. Luckily, I went to a fantastic dermatologist, Dr. Mitchell Ede (I believe his daughter has taken over his practice now) in Cincinnati, OH, and he had me sent to Mayo Clinic for tests. I was diagnosed with Morphea, and immediately put on a regimen of some sort of steroid and vitamin E. Within a year or 2, the disease was "arrested".
I remember being basically an "ill" child. I was sick often, and suffered from sinus and respiratory illnesses. From what my doctor told me, there was only one other child in the state of Ohio at that time who suffered from scleroderma. I felt like I was almost the only child in the world with this disease!
Of course, now that I have discovered this website, I am anything but alone!
After age 6, I started gaining weight, and was put on a diet at age 9. I successfully lost the weight, and became more physically active, but remained fatigued throughout my life.
After age 20, I began to gain weight again, and felt extreme cold, fatigue, and lack of interest in anything. I have been pregnant, only to experience miscarriage. I now realize that the majority of my problems are now from hypothyroidism. I am not sure if the scleroderma was responsible for it, but believe it was, and thank god I have finally found out the problem and am being treated with Synthroid, which is helping in all aspects of my life.
Thanks to a diligent dermatologist, and family support, I have grown up with confidence with my scars from scleroderma. I live a normal life, and most people do not realize I have a problem until they see that my hand looks "burned", or that I can't bend my right wrist or ring and index fingers.
Everything on the right side of my body has been affected:
My right foot is a little smaller than the left, my right arm and leg, and my right "waist" is indented with a scar, but the indentation is more from the biopsy than the disease. I have had a breast implant put in on the right side to compensate for the huge difference in breast size, and now feel much more "balanced".
I am not a hemophiliac, but every surgery has ended with the same comments from surgeons: "Wow! I have never seen so much blood in my life...I almost had to give you a transfusion!" I wonder if anyone else has had problems with excessive bleeding as a result of morphea.
I am extremely lucky in the sense that the disease did not spread to my face, and I have been blessed with a lovely face.
My mother did a wonderful job of keeping me physically active, and she is still, in all respects, the most positive person I know.
As a child I only remember one person teasing me in elementary school about my "brownie disease"...she even carried it on through he 8th grade and felt compelled to mention it when she signed my yearbook! I know my case is mild, and my suffering minimal, but I do understand the cruelty of children when it comes to addressing disabilities.
I have a very physical job, and a very social one at that, and am confident although I have a slight disability. I suppose I have chosen to "forget" that I even have a disability. My mother involved me in piano lessons as a child, and my gym teacher devised a little "wrist exerciser" so I could try to keep my range of motion in my wrist and hand. I do not know if it helped, but I can still function.
After the morphea was arrested, I never thought about the disease again. Other than yearly checkups at the dermatologist, I hardly remembered it. Only recently has my interest been sparked by my current problems with low metabolism, dry skin, acne rosacea, thin/brittle nails, fatigue, sleep disorders, depression, and migraines. Knowing that I suffer from an underactive thyroid makes me wonder if it could have been caused by the morphea. Raynaud's syndrome is a symptom of hypothyroidism as well as scleroderma. The two must be connected, but I have not found enough information to be sure.
I realize now that my failure to pay attention to the after-effects of the morphea has possibly caused the problems I have now. I am open to all information that readers may want to send regarding their symptoms/lives. I am so amazed that so many people have suffered from the same problem.
I used to feel resentful that I had morphea, but now realize that I was lucky that it did not continue. I have a hard time believing, when my morphea was arrested so quickly, that other people have lived several years with the disease worsening for them.
My Dermatologist was a real advocate of Vitamin E, and I suggest that people who are having problems improving ask their doctors. Perhaps it wasn't responsible for helping, but something did work.
Also, for all the people suffering the same low-thyroid symptoms, I suggest checking out the hypothyroid websites, and discussing possible thyroid problems with their doctor they can't always just be detected by a blood test.
I still don't know what caused my morphea; could it have been where I was from? That my dad was in the air force? That I had contact with some virus, bacteria, or chemical? I would love to know what causes it. I have suffered from low immunity my whole life, and wonder if it is from the morphea.
Thanks for reading, and good luck.
copyright 2001 Amie Yaussy Return to home page