Diagnosed at 50

What do you want others to know about lupus?

There many types of Lupus. I have SCLE. It affects my skin and joints.I have a severe case. When you see someone in a hat or long sleeves in summer,it's not always a good time to ask or make a smart remark about them.

Why is lupus a cruel mystery to you?

I have always had trouble being in the sun,but I always worked around it. I love it outside and am an avid gardener.It's awful not being able to be outside or if you do you pay dearly for it.I always had long hair, but now if gets any length it falls out. I have to wear a hat outdoors and under any light bulb that gives off uv rays. If I get too hot I break out. Last summer all the skin peeled off my feet because they broke out. We drove 14 hrs to see a DR. to see if they could help me.The verdict is still out on that. I wear 100+ sunscreen every day. My husband has been wonderful, but it's affected his life too. I always did all the yard work. We were always active people, but we have to plan vacations around the lupus. If you do wear short sleeves people stare and avoid you. I wish there was a cure.

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