Tori: Localized Scleroderma or Juvenile Scleroderma

My name is Tori. I am thirteen and I was just diagnosed with linear morphea, localized morphea, and Juvenile Scleroderma about four weeks ago.

It all started last year in September. I was taken to a doctor because I had dry skin. They found a discoloration below my left breast. They did not know what it was so they scheduled a biopsy. It was in such beginning stages that the doctors could not determine that it was morphea or not. Some of them thought it was, some of them thought it wasn't.

The doctor did not know what to do with me so he referred me to a rheumatologist, who was a good friend of his. When we got to this appointment he said he was positive that it was not morphea.

A few months passed and the mark on my chest started getting bigger and whiter, so we went to a local dermatologist. He said it was just dry skin.

In October, I went back to the dermatologist that we last saw. He looked at it and he was now sure it was morphea. (He was the one who said he was sure it wasn't.) Now he said I had to go back to the rheumatologist I saw earlier. When he saw it for the second time he said it was morphea for sure. He sent me for some tests and now he diagnosed me with linear morphea, localized morphea, and Juvenile scleroderma.

He prescribed many medications, such as folic acid, prednisone, methotrexate, and calcium. Due to the medicine, I have to be on a low-carb/low-sodium diet. Which is really hard for a thirteen year old to be on. I have to be on this diet because they do not want me to have stretch marks. I weigh only ninety pounds and I am 5'2" tall. I have probably gained two pounds already.

I have another appointment on Thursday, to check my eyes and stuff like that.

I hope my story was helpful, and that maybe there is someone out there like me.

This is not the first rare disease that I have had. When I was born I was diagnosed with CPL (Congenital Pulmonary Lymphangiectasia), which could have killed me at the age of one.

When I was four, my tonsils expanded so big that I was in the final stages of sleep apnea. That also could have killed me. Just last year I had a pre-cancerous mole on my hand that needed to be removed. If we had left it alone it could have become cancer and that would have killed me.

Other than all that stuff, I am a healthy, honor roll student.