By Jennifer Brennan Leach, 32, Barnegat, N.J.; diagnosed with systemic JRA at age 2
My name is Jennifer Brennan Leach and this is my 30th year living with juvenile rheumatoid arthritis. I was diagnosed in 1984, at the age of 2. Too young to verbalize pain, too young to understand, too young to have arthritis, right? Wrong. Children get arthritis, too.
I visited many hospitals. I learned at a young age that needles would be a very big part of my life. I assumed that one day I would be in a wheelchair because the children I saw with JRA were. I took up to 20 baby aspirin a day. I was on gold, a drug no longer used. I have tried Enbrel, Humira, Vioxx, Celebrex, Mobic, prednisone, cortisone injections and – for seven years my miracle drug – methotrexate.
I have JRA in my whole body. My parents would have to carry me all over the house and spoon-feed me. I would cry over a sneeze. The pain was unbearable. In elementary school, I made friends and was never treated differently by teachers. My kindergarten teacher would push me passed my limits. I couldn’t do what others could. I gave it my all and continued with that mentality throughout life: always put in 110 percent.
In 5th grade, a girl named April who helped me up and down in gym, became my best friend for life. I couldn’t partake in many of the physical games played in school. When we would have to race, I was always chosen by the slowest runner because they could beat me. I still ran.
There were things I wished I could do: I longed to sit Indian style, do a cartwheel, even wear sandals. My feet are deformed due to JRA. I have never worn sandals and at the beach I dig my feet in the sand. It’s a very real reminder of how ugly this disease is.
In middle school, I kept a second set of books at home and was allowed access to the elevator. I was on the town softball team and loved hearing the coach yell, “Back up, we have a good hitter!” I was pretty good at bunting too.
At night I would sleep with braces on my wrists. I would go to physical therapy and have hot paraffin wax put on my hands. My favorite was water therapy. I was involved in student council, national junior honor society and drama. I had friends, got a job at 14, went to proms, had a boyfriend and had some great teen years all thanks to methotrexate.
After high school I had to stop taking methotrexate. I went from pills to injections and then my body just had enough. I had a couple years of minimal disease activity, controlling my swell ups with Mobic.
Then I found I couldn’t lift my leg over the tub wall to take a shower. I couldn’t put on socks and shoes. I started going up and down stairs one foot at a time. This wasn’t what I wanted for my life so I made a consultation at Hospital For Special Surgery in New York City. X-rays revealed my hips were bone on bone. I felt so comfortable with the surgeon and his knowledge and expertise that I scheduled surgery. At 23, in 2005, I had my first major surgery, a bilateral hip replacement. It felt like someone shot WD40 in my brand new titanium and chrome hips.
In 2007, I had my daughter and in 2011 I had my son. Both pregnancies were very different. I experienced remission with the first but not the second. Both were delivered via planned C-section. After both, my arthritis came back with a vengeance. I couldn’t even lift my newborns. I used crutches and had to be put back on methotrexate and prednisone.
This disease has left me disabled and I can no longer work. Even with limited mobility I was able to fulfill my dream of walking (with a limp) down the aisle. There will be more surgeries in my future but I take each day as it comes. Laughter is the best medicine and my children supply that for me.
I’m surrounded by a wonderful husband, supportive friends and family. My father prepares dinners and always tells me about new things available for arthritis patients. My mom helps me daily and I am so thankful for her unconditional love through the years. My rheumatologist is amazing: she treats the patient not just the disease. I thank God for all I do have and feel blessed despite the challenges that arthritis brings. Never let this disease stop you from achieving your dreams!