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juvenile arthritis awareness month: this fight is personal

Arthritis is caused by inflammation of the joints. It causes pain, swelling, stiffness, and loss of motion. Juvenile arthritis is the term used to describe arthritis in children.

In late July 2015, my then 13 year old daughter showed the first recognisable signs of Juvenile Arthritis, a swollen finger joint with no explanation that never went down. By September, she was using a knee scooter to get around because she could not walk and by October I was holding her glass while she drank because the glass was “too heavy”. On Monday, November 30th, we got the official diagnosis of Poly Articular Juvenile Idiopathic Arthritis. It is still very surreal to imagine that on this day last year, my Izzy was on a traveling soccer team, ran cross country and track, or that I would find her running laps around the house when I came home from work because she “just could not sit still any longer.” How quickly life can change.

The rapid decline that my daughter experienced has been incredibly hard on her and our family. Each of our lives has changed over that year. Our active family that liked to hike, raft, and generally play outdoors was challenged to find new ways to spend our time. Our Friday night dinners and walks were converted to Friday night pizza and movies at home. Our weekend excursions were changed to weekends at home or one parent with Izzy, and one with the other kids. Izzy, went from running around the house to staying in bed all day watching endless reruns of Lost and Friends. As parents, we were both scared for our daughter and depressed at the loss of our normal.

The following year, came the local Kids Get Arthritis Too foundation event. We prepped Izzy for weeks that we were going to make it out of bed and be there to meet people and hear the speakers.  We “saved” her energy for days to make sure we were able to attend. I am so grateful for this foundation and for these types of events. It was amazing to meet other people in our situation, and to hear from doctors in an informal setting; being able to ask all the questions that you forget to ask in your 30 minute visit every three months with your Rheumatologist. But the biggest gift came at the end. They did an art therapy activity with the kids, giving them canvas and paint, telling them to “paint” arthritis.

My husband and I immediately said that they had given us the wrong colors to accomplish the task. There were only pinks, blues, and yellows. There were no grays, blacks, or the red we would need to paint a Netflix logo which is immediately what came to my mind when I thought of JIA. It seemed like all my daughter did was watch TV since the pain began. We were talking about this and she was looking at us like we were crazy. She emphatically said, “I am not going to paint a TV and black room”.  She asked me to pull up the quotes I send to her at school. See, breaking down and thinking in terms of blacks and grays is not something that I let her see very often. I try to remain positive and every day, I would find inspirational quotes to send to her to help her make it through the day. So she scrolled through her texts till she found one she liked and she painted it in bright, happy colors. That was a very proud moment for me. My daughter taught me something; to practice what I preach. Even more surprising, all the kids in the room found beautiful things to paint. They were all so strong in the face of this disease. Watching those kids display their paintings was both humbling and inspiring. It is a lesson that I would never forget.

Arthritis is caused by inflammation of the joints. It causes pain, swelling, stiffness, and loss of motion. Juvenile arthritis is the term used to describe arthritis in children. The most common type that children get is juvenile idiopathic arthritis (idiopathic means “from unknown causes”). It is largely believed that something in your genes makes you predisposed to this illness and that something like a virus sets it off. (I could write two pages on how this makes you live in constant fear for your other children). Juvenile arthritis affects children of all ages and ethnic backgrounds. Over 300,000 American children under age 18 have arthritis or other rheumatic conditions. While most cases are reported early in life, it can strike at any time. The swelling and loss of motion can, and often does, cause permanent damage to the joints.

Organisations such as Kids Get Arthritis Too provide an invaluable resource to parents and children with arthritis. Not only do they provide information and educate families about this disease but they also link families together, giving them opportunities to build their own support systems. And, through their camps and conference programs, they empower these small warriors to find the positives in their illness and learn how to take care of themselves.

To learn more about Juvenile Arthritis or how to support Kids Get Arthritis Too visit their website.


This blog is a condensed version of an ICON employee’s personal journey of courage and endurance “July is Juvenile Arthritis Awareness Month” which appears as a two-part article featured on LinkedIn. To view the full blog please visit https://www.linkedin.com/
 

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