Carly's Story

Toxic Treatments are not a Cure!!

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Carly's Story

Carly I am 21 years old and was diagnosed as having SLE lupus in August 2001. I had unexplained problems long before the diagnosis, ever since I can remember. They caught my lupus while there was still no organ problems. I was so lucky my parents cared for me to find a cause, as it took 6 different types of doctors and more than 4 years to discover the source of my problems.

I went through a lot of struggles trying to be and feel normal. I have had health problems on and off since the 1st grade. Many people didn't understand how bad my health was emotionally and physically. I didn't want people to know I had a disease, as I do not like to be given pity by strangers. I thought I had lupus for a year before the doctors figured it out. Many of them wouldn't listen to me; they would just blow me and my parents off. They said we were overreacting and that I was just trying to get out of school. My friends became fewer and fewer, as I was different and they did not understand my problems and limitations.

I started missing school in fifth grade. By the eighth grade, I missed over one quarter of my classes. I was taken out of school early in the ninth grade and tried to continue my education through various programs offered by the public schools. However, all of these programs were not set up to deal with my varying patterns of illness and fatigue. Between these and a bit of home schooling, I got my GED "on schedule" with my friends graduating from high school. I have tried to take some college courses, but I am unable to maintain regular attendance. I have been unable to hold a job.

I have come to accept my diffences and limitations, so I am willing to tell my story. Since I was a kid, no one would listen or care about my lupus. Maybe people might listen now. Toxic medications that do not always control symptoms are a nightmare, literally.

We need to find a cure!

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