I am 26 years old and I was diagnosed with a rare connective tissue disease. I wrote about some of my experience in life in a previous blog but I wanted to start spreading the word about scleroderma and how it can affect many people. Most people have never heard of the disease.
Scleroderma is a chronic hardening and tightening of the skin and connective tissues disease that has affected an estimated 300,000 Americans. Most of my information came from either my doctor; whom has been treating me for the past 5 years, and the scleroderma foundation. They do have a website that anyone is more than welcome to visit. WWW.scleroderma.org Unfortunately at this time there is no cure but everyday there are researchers who are working hard to help people like me. There are treatments and medications that can help manage the symptoms.
Every person who is diagnosed with scleroderma is effected in a different way. However, anyone who was told they had this rare condition at some point asked “Why ME?” there is no one answer because at this point no one knows what causes the disease. It is hard not only physically but emotionally. Many people become depressed and you begin to feel you have to put a smile on and pretend to be ok from the outside. If you have been diagnosed with any kind of connective tissue disease you are not alone. There are support groups in almost every state any plenty of resources to help you live with any disease.