I am twenty three years old and was diagnosed with morphea in high school at the age of probably about fifteen. The details are foggy because I tried to ignore it and act like nothing was really wrong. I had a patch on my leg, big deal. Truth is, it did bother me and it still affects me.
My mother has an autoimmune disease and my brother and I both have autoimmune diseases now, granted they are not the same kind.
It started out with a white patch on my left thigh. The skin felt hard and kind of waxy looking. It slowly grew larger but through time the skin did not feel so hard. I remember it itching really bad at times but that has stopped as well. Now it is a really dark color. It covers my left thigh and it creeps up to my hip. I have also had some brown spots appear on the back of both of my legs and thighs, but the skin is not hard.
It is hard being a young woman and having to always wear jeans while living in a beach town. But I try really hard to not let people see that it actually does bother me. I grew up on a swimming team and I became a lifeguard at the age of eighteen and did that for three years. It did not overcome my insecurities but it helped to be able to do the things I love and no one bugged me about it. I really wish I could lay out at the pool and not worry about people staring at my leg. I envy the girls around me sometimes and hope they know how lucky they are. But I remind myself not to take anything for granted and I am thankful I do not have any life threatening illness.
Since this disease has so many questions unanswered, I am afraid of it spreading to areas that I cannot cover up or if I could have been misdiagnosed. I am also afraid of passing it along to my babies, if I am lucky to have some.
I am mostly speaking out to young women who feel they will never be loved because of this disease. My parents have been a big support and my daddy tells me all the time that a man will fall in love with me for me and my skin will not even be a factor. I hope someone in your life tells you the same!
Recently, I have been having trouble with my breathing at night and I have been having sharp shooting pains in my right arm and it scares me. I do not know if it is because of this disease or if it is just stress related.
Email: [email protected]
Story edited 08-28-06 JTD
Story posted 10-23-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.