Lori’s Hands interviewed University of Delaware senior, Morgan Wiener. Morgan, a Mass Communication and Media Studies student, is from Short Hills, New Jersey. Here, she shares her experiences about being diagnosed with arthritis early in life.
Lori’s Hands: What do you remember about being diagnosed?
Morgan Wiener: I don’t remember much since I was young but my parents one day noticed my ankle was swollen. They originally thought I had a hairline fracture but when it didn’t get better, they realized it was something more. I went through a series of tests. At one point the doctors thought it was Lyme disease but blood work ruled that out. They eventually diagnosed me with Juvenile Rheumatoid Arthritis.
LH: How old were you when you were diagnosed?
MW: I was 5 years old.
LH: What have been your experiences like with doctors and nurses? How frequently do you have to see a doctor because of it?
MW: I live in New Jersey and when I was younger my doctor was located an hour from my house in Hackensack. She then relocated to a hospital in the Bronx so it became more of a hassle to get to. She was great and a really a well-known specialist, but when I got older she passed me off to another doctor. At the time I was a little upset because I had been seeing her since my diagnosis. However, the other two doctors I’ve had since then have been good too. I only go twice a year and they usually have me in and out.
LH: What is one thing about your life that is different because of your diagnosis?
MW: I grew up very differently from my siblings and friends because I was not able to be as active and fit at times. There were times when the pain was so bad, I couldn’t fully straighten my leg and I’d be limping around. This would mean that I had to miss a lot of school and gym classes usually. Growing up, I’ve also had to get my eyes checked every few months because if I developed arthritis in my eyes and it went untreated, I could go blind. In addition, I have to get blood work and x-rays done every year.
LH: What would you tell a new Juvenile Rheumatoid Arthritis patient?
MW: I would express how hard it can get because of the different lifestyle. You can’t be as active as other kids and you have to see doctors constantly. However, I remind myself that there are so many worse health conditions and while there is no cure for JRA, you can still treat it and live a normal life.
LH: Does arthritis run in your family?
MW: None of my family has ever had JRA. My grandparents have arthritis but from old age.
LH: What do you do to treat or manage your arthritis?
MW: When I was little, I used to get my knees and ankles drained and had a steroid put in. I actually got put under anesthesia for the first few times but as I got older I didn’t need to. That worked for a while but then I would have less and less months of feeling no joint pain and swelling. At times, I would go months feeling completely fine and my doctors said I might outgrow JRA with puberty. Unfortunately, that didn’t happen.
Eventually I went on medicine. At first it was by pill, which worked well for several years. The pill was called Methotrexate. Methotrexate treats several kinds of cancer, including bone, lung, breast, head, neck and cancer of the blood. It also treats rheumatoid arthritis. Then the doctors took me off of it and I was symptom free for a few years and needed no medication. When my symptoms returned, the Methotrexate no longer worked and the doctor started me on Enbrel. I administer it to myself in the form of a shot once a week. I have been on it now for three years and it works great. Sometimes I am bad with taking the shot on time so my joints will start to ache and swell but as soon as I administer the shot, I feel a lot better again.