Anyone who lives with rheumatoid disease or who is close to someone with RD knows that it takes strength and courage to battle this illness each day. But what about when the person battling rheumatoid disease is a child? It takes a special kind of resilience for both the child and the entire family. Today, we wanted to share with you a special story about one child living with rheumatoid disease. We'd like you to meet Addison -- a seven year old who has been living with RD for over five years. Addison and her mom, Shanna, share their story below in an effort to educate others on the fact that rheumatoid disease can affect people at any age.
Interview with Shanna and Addison
Firstly, could you please tell us a little about your family and Addison?
Addison is a spunky, kind, loving 7 year old with the most beautiful strawberry blonde hair. We are a family of five which includes Addison’s 10 year old brother, Nathan and a shitzu puppy named Felix! We live in Boca Raton, Florida and some of our favorite family activities include going to the movies, beach, swimming and bowling.
At what age was Addison diagnosed with rheumatoid disease?
Addison was diagnosed with JRA (Juvenile Rheumatoid Arthritis) just before her 2nd Birthday.
What were the first symptoms that appeared?
Addison would always want to be held and I just thought she was a “needy” baby who was struggling with separation anxiety. For her second birthday we planned a family trip to California and while in the parks, she refused to walk, either wanted to be held or pushed in her stroller. A couple of weeks later while at home, Addison was playing with some toys on the floor. She was talking about her favorite doll that was located across the room and instead of getting up to go get it, I saw her crawl across the room. Since she was almost 2 and had been walking for over a year, this was very concerning to me. I brought that up at her two year old doctor’s appointment. Her pediatrician saw right away how swollen her joints were and referred us to Seattle’s Children’s Hospital (as that is where we lived at the time).
What has been Addison's experience with rheumatoid disease treatments?
For three years, we had to give Addison weekly injections of methotrexate. The first couple of months we struggled by holding her down while one of us injected her, to finally administrating the shot right after she had fallen asleep. We dreaded Sunday nights and it never got easier. If she moved, your first instinct was to pull the injection out. Sometimes she would wake up in a haze and ask what we were doing, sometimes we were successful and other nights we were up to midnight because she had woken up completely and was "on to us". Her rheumatologist mentioned that we could “hide” the medicine in ice cream or smoothies. We created “Smoothie” Sundays where we would have a healthy smoothie to start off the week. We would all drink them, except Addison’s would have her medicine in it. She could taste it and she would gag with every sip. That lasted about three weeks, so we were back to injecting her again. Things were good. The medicine was controlling her JRA....until it wasn’t. I started to notice she was having trouble walking long distances. She couldn’t walk an entire grocery store and would ask to sit in the cart 99% of the time, she was tired but still wanted to do normal things 7 year olds like to do. She had asked me to join a gymnastics class and I was so excited for her. The first day was horrible as she physically could not do what the other girls were doing. Her little body just didn’t have the strength. As she stared at me with tears rolling down her face, I knew the medicine wasn’t working anymore. After talking to her doctor, we decided to try joint injections and they worked for about six months. It was such a nice break for her not to have to be on medication. At her next doctor appointment, she prescribed leflunomide and that would allow her to swallow a pill. The first day, she swallowed it like a champ! However, after a couple of weeks, we started to notice she was having stomach issues and had to go to the bathroom after every meal, which we knew was a side effect. We felt so defeated. During that time, she also came down with a horrible virus which required her to be hospitalized, causing her to miss 2 weeks of school. Her doctor took her off that medication so she could fight that viral infection and once she was healthy we decided on joint injections again and to continue leflumonide but at a lower dose.
What do you see as the hardest thing about living as a child with this disease?
We hear all the time “she doesn’t look sick” and that is frustrating. Addison is resilient, strong, has a positive outlook and amazing faith. This helps project on the outside that she is happy and enthusiastic despite the daily battle that she fights against JRA. We have heard comments from people because no one looks like they “need handicap parking”. Addison has a mobility chair and at the age of seven people have told us directly that she’s “too old for a stroller”. As a parent you advocate, but as a child it makes her feel different. That’s not fair for her to feel that other people see her as not being “normal”.
In what ways has rheumatoid disease most impacted your family?
We recently relocated from Seattle, Washington to Boca Raton, Florida because the cold winter had been awful for Addison’s joints. She barely could get through a week of school and would go to the nurses office during her recess times as she couldn’t handle the cold or keep up with her friends. While on a visit to Florida, she mentioned that she “didn’t hurt there." She had no quality of life in Seattle, so we moved our family across the country so she could feel more comfortable and she is doing wonderful.
What do you most want others to know about rheumatoid disease?
Arthritis is not just an “old” person’s disease. It doesn’t discriminate and can affect anyone.
What information, encouragement or advice do you want to share with other caregivers, especially those caring for other children with rheumatoid disease?
When Addison’s medication was controlling her arthritis, I thought, “she’s healed, she will take this medicine and it will go away." I didn’t take into consideration that this is a chronic disease and while she may feel good on some days, it will most likely be forever. Before she was diagnosed, I felt guilty that I used to get mad at her when she wanted me to hold her because it hurt to walk. She was too little to tell me how much pain she was in. We felt guilty as a family when we would get disappointed because we couldn’t do certain activities because she couldn’t keep up. I realized it was normal to have all those feelings. Children with this disease have an extreme tolerance to pain, discomfort and will adjust to their daily activities based on how they feel throughout the day. Because this is what they experience on a continuous basis, even when you live with them each and every day, you may never realize they are working through a bad day. Often it takes an extremely bad day for you to recognize it. Watch for the subtle signs, not just flareups, fatigue or limited movement. That likely comes on the most difficult of days yet everyday can be a struggle.
Is there anything that Addison would like to tell other children living with RD?
Children with arthritis are still kids! We want to be treated normal and don't want to be teased because we can't do certain activities that are so easy for other children to do. We have feelings and want you to understand that we have pain when we play tag or play sports. We want to participate, but sometimes just (physically) can't. Just be kind and be nice and still include us.
Thank you, Addison and Shanna, for sharing your story with us!
RPF believes that sharing our own personal stories about living with rheumatoid disease is a great way to provide support for others. Knowing we are not alone in our experiences can be one of the most encouraging things. We thank our supporters who are willing to share their stories and help others who are going through similar situations. Let's learn from one another! Click here to share your story.