Improving Lives Through Advocacy And Awareness
Donna Fox is a volunteer, support group leader, advocate for the Arthritis Foundation, Kentucky Chapter, and mother of two young sons. In this interview, Donna explains what it was like to be diagnosed with scleroderma and juvenile rheumatoid arthritis as a child, and explains how she later shed feelings of loneliness and isolation and began her mission of advocacy. Her work with Camp Diversity and her awareness program in the schools is very inspirational. In part 5 of our interview, Donna also offers insight regarding how you can become an arthritis advocate too!
Tell us about your experience with arthritis. What type of arthritis do you have? How long have you had it? How has it impacted your life?
My journey down the road with arthritis began in 1970 when I was 4 years old. My mother was concerned about a strange rash that had developed down my right side, from underarm to ankle. A biopsy was performed and my parents were informed I had scleroderma.
Approximately 2 years after the scleroderma diagnosis, I was in pain. Limping and scooting had become my mode of transportation. In 1972, at age 6, I was diagnosed with juvenile rheumatoid arthritis (JRA). At this age I had no idea what arthritis was. There was pain, swelling, and limited mobility. There were doctors, shots, therapy, and medications.
By age 9 many of my joints began to deform. My legs and feet hurt and my knees would not straighten. My hands were becoming painful and my fingers were crippling. Trying to smash them straight by sitting on them didn’t work. I had to make a decision: let arthritis get me down or simply keep going! I chose the latter of the two.
I was a "normal" 12-13 year old. I rode my bike (maybe not as far), I went skating (though I remained on carpeted areas), and I went to the movies. Running and gymnastics were not friendly to me but I learned to compensate. At my schools field day, I could not participate in most of the events but I won every time we had the piggyback race and I was aboard my schoolmates back. One of my very favorite memories is the blue ribbon I - the girl with arthritis - won in the piggy back race.
Not much was stopping old arthur . By age 13 my mouth would not open due to jaw involvement so WHAT DID I DO? I fought back. I had jaw surgery and I felt I had conquered it because now my mouth was opening. Little did I know I would have to conquer yet again and again and again. At age 15, I had to have surgery on both feet and again I conquered because now I could walk the mall!! At age 17 and 18 I had surgery on both hands but once again I came out for the better. Arthur still didn’t win! My hands were better than ever!
Due to the arthritis I learned I could still function and do things, I just had to do them differently. I was not disabled, I was differently-abled. By age 20 my arthritis was calming down. I graduated, became a travel agent, moved out on my own and got engaged. At age 25, I gave birth to my first child despite hearing this would not be a good idea and would be next to impossible. Unfortunately, after his birth my hips were in need of replacement. The decision about hip replacement was difficult considering I had a 2 year old but I knew arthur wasn’t going to get me down now. My decision was made to have both hips replaced at the same time. At age 27, I had double hip replacement and it was a huge success. The arthritis calmed down again which was a good thing because 2 years after my hip surgery I gave birth to my second child. I have not had any surgeries since my hips but I will be having a shoulder replacement and ankle surgery in the near future.
