Carol O'C
Diagnosed at 57

What do you want others to know about lupus?

Lupus is debilitating and changes your life. It can affect many organs, skin, kidneys, eyes, joints, bones and your overall immune system. It can lead to isolation from the fatigue and chronic medical problems. It is medically costly.

Why is lupus a cruel mystery to you?

I am a registered nurse and cannot work due to disability occurring my recent LUPUS episode.I became seriously ill in Dec 2011 and was in the hospital until April 2012, then rehab for a month, then home.I had lupus lesions on the skin and on the brain and had a stroke.I still have memory issues and am disabled so far. I hope things will improve. I am on chemo and steroids and am prone to infections due to being immunosupressed.I had symptoms of pain and fatigue for 10 years before diagnosis of lupus.I often miss family events due to fatigue or illness, which is what bothers me the most.I am hoping to start a support group in the Albany NY area, as the only NY group I can find is in NYC.

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