Awareness and Support
Paula Sussman, from the US, was diagnosed at age 52. Here is her story in her own words:
I have always had asthma, blood pressure problems since pregnancy, and Hashimoto’s. I always had back and knee problems which really became problematic in my 40's. I had bladder problems and a hysterectomy in my 30's. it was always something, but I would get better.
In my late 40's and early 50's I had two ankle surgeries (tore tendons in left and right ankles just walking), 3 rotator cuff surgeries, two knee replacements in my right leg and I never got better. I started to think I was allergic to the metal from the knee replacements. During all this time I would periodically wake up in the middle of the night with my ear hurting. I would get an icepack and eventually fall back asleep and forget. It got worse and worse and my ear started growing nodules. No one knew what the ear bumps where. They said it was just a cosmetic issue, so I did nothing.
I started asking doctors,” If I am fine, why have I needed so many surgeries?” I didn’t play football for the NFL! This seemed weird. Everyone thought I was crazy and depressed, but my endocrinologist agreed something was wrong and sent me to an academic rheumatologist.
After 2 years following, he asked me if there was anything weird going on that I didn’t think is connected. I pointed out the weird bumps that hurt on my ear and that I heard a buzzing noise no one else did. He wrote Relaspsing Polychondritis on a piece of paper and said,
“Read about this and join the Facebook support group.”