Adult-onset Stills Disease
Shannon's Journey
My journey began when I was 27 years old. It basically started with a sore throat and my knees felt like they had cramps in them all the time. My doctor sent me for xrays and both of my knees were inflamed, very hot, swollen and sore. A week after xrays were taken, I ended up feeling like I had the flu, (or so I thought). I would run a very high fever then within an hour I would be frozen solid, this went on for a long time. I also started presenting with a weird rash on my inner arms and thighs. From there every day something new would happen, I slowly started not having an appetite, so would not eat. I basically became bed ridden, I could barely walk and could not use my hands and fingers at all. I had absolutely no strength. I would end up being so sick that I would get admitted to the hospital and be in there for around three weeks, they would let me go home, I would be at home for a day or two at the most, then would get readmitted to the hospital again for three weeks. This cycle continued for over a year. During this time I weighed only 46 pounds. I live in a small town in Saskatchewan Canada, so the bigger centers were 4 hours away. I finally went to the Mayo Clinic in Rochester 1 1/2 years after I got sick and was finally diagnosed. I was finally put on a medication regime and was able to get the illness under some kind of control. It took a few years, to get to a point where I went into remission which was 1991. I stayed off meds for one year and then tried to get pregnant with my second child, which my daughter was born in 1993.
Life has had its ups and downs, a little flare up here and there but nothing major until a year ago, where I am no longer in remission. I am 60 years old and wanting to make what I have left as comfortable as possible. The hands, knees, ankles and memory are getting worse.
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