sfoltyn


It all began eighteen years ago. I was in my first year of college. Having returned from spring break in South Padre Island, a small white line appeared on my forehead. Not thinking much about it, I dismissed the notion that something could be medically wrong. As the line did not disappear, my mom made me an appointment with a dermatologist. He was not sure what to think. He had me begin taking large dosages of vitamin E. He also sent me to a doctor in Houston. Neither doctor could really help my siutation... They mentioned the condition known as scleroderma, but my condition only began to worsen. I will never forget overhearing my mom reading the severity of scleroderma from an old medical book to my dad. They were both upset wondering why their little girl was ill. Neither had done anything that would jeopardize their children's health.

Thankfully, my brother had been researching my symptoms. He made me an appointment with another dermatologist.

Dr. Cox had seen scleroderma on patients before. He reassured me that I had linear scleroderma rather than systemic. He put me on plaquenil. Within a short time, I was in remission. To undo some of the damage from my scleroderma, he transplanted some of my hair from the back of my head into my front. It was quite painful, but I kept thinking how great it would feel to not worry about my scar on my forehead. The line had indented my forehead. Thankfully, I have pretty thick hair so my bangs keep it covered. I laugh to myself that if I am blessed with a long life I will one of the few old ladies with bangs.

I became a teacher and married the love of my life. He was and has always been supportive of my disease. He has not always understood its complexity. Part of that is my fault as I try to keep my fears to myself and be strong for everyone. My brother probably understands the most. He has held my hand while they shot cortisone or other medications in my head. He also has seen the side effects of the plaquenil on my body.

I was in remission for several years. Jake and I had two children. I was always afraid that I could give my disease to my children, but I was reassured that scleroderma is rare but not contagious.

Through the last eighteen years, there have been periods that I have been out of remission. Luckily, Dr. Cox has been able to get me back on track. I also have a spot of scleroderma on my chin. We have noticed a real connection to my stress level and my condition. Taking time for myself is key; however, that is not always possible as a mother, farmer's wife, school counselor,etc.

I have seen Dr. Mayes who has written a book on scleroderma. She confirmed my diagnosis and method of treatment. Dr. Cox also sent me to a group of physicians in Houston. I felt like a guinea pig, but they also confirmed everything. That did give me some peace of mind.

My scleroderma has been active again for the last two months. We have not been able to get it back as of yet. I am on the Plaquenil again. I hope and pray that I can get it back in control again. My heart goes out to all of the parents out there whose children have scleroderma. It is a mean disease. Although I can hide my scars pretty easily with Dermablend, one cannot hide how you feel inside. I always tell my kids that pretty is far greater on the inside than the outside.

One of my hardest problems is being scared but also feeling guilty feeling scared. So many others have much worse diseases than myself. The whole thing gets quite complex. I hope that my story can help at least one person know that living with linear scleroderma is possible. I am blessed with two awesome children and a supportive family and friends. Most of all, I have realized that we all have crosses to carry. But with God all things are possible.

sfoltyn@hotmail.com
 
  

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