MAC Region: J12 Palmetto
Tell us a little bit about who you are apart from your illness?
I am a woman, mother, and wife. I have advanced degrees and I am a patient advocate for many different issues.
What is your diagnosis and when were you diagnosed?
I was diagnosed at age 4 in 1970 with Juvenile Rheumatoid Arthritis
Can you talk a little bit about your experience with diagnosis?
Since I was so young I grew up with RA, I was on 8 aspirin a day for 10 years. I had surgeries to straighten my knees while I grow up, everything was experimental kids didn’t get Arthritis.
What is your greatest challenge in living with a rheumatic disease?
Learning to listen to my body when it needs rest get some or you won’t be walking tomorrow, rest up before doing something strenuous both before and after event.
Describe something that keeps you hopeful in day-to-day struggles with illness.
I was told I wouldn’t walk after 18, I’m 50, they told me I couldn’t have kids my sons are 26, and 24. Everything I was told I couldn’t do I will find a way to do it.
Why is advocacy important to you?
I advocate so people will never have the experiences I have had over the years. I love to talk to the newly diagnosed especially kids and show them my hands. I tell them you will “never look like this”. Medications and treatments are so much better now than when I was growing up with RA.
