Diagnosed at 26

What do you want others to know about lupus?

I have been struggling with SLE for 17 years now, not including the five prior years which I was misdiagnosed with RA. I have suffered joint pain, pericarditis, pleurisy, headaches, confussion (cognitive), kidney problems (Lupus Nephritis), constant fatigue, hair loss, vasculitis and most recently a stroke (Lupus Cerebritis).

Why is lupus a cruel mystery to you?

I was told by my doctor not to have children because my Lupus was so active that I would not survive a pregnancy. My husband and I had planned to have a family. A few years ago, I had a stroke which has left me unable to work. The job I had to leave as a result, I had worked very hard to achieve this level and in a snap it was all gone. Lupus has taken a family and a career away from me! Through the years, the stress of not knowing what will happen next, is a huge black cloud over my life.

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