July is Juvenile Arthritis Awareness Month! Instead of listing facts and statistics about the disease, I’ve decided to write each week about what it meant for me to grow up with JRA and delve a little more into my experiences with this disease.
|Swinging with swollen knees
at five years old
I was diagnosed with JRA at 13 months old and do not know a life that has not been impacted by this disease. My childhood was filled with therapist visits, doctors appointments, pool therapy and frequent medication changes. I wore bi-valved casts on both my legs, every night when sleeping, to prevent my knees from contracting in a flexed position. Twenty-seven years ago they did not have colorful casting plaster and we would decorate my leg splints with stickers. I remember when they finally offered colors and I would always get red and green splints around Christmas time! I also often wore resting wrist splints to prevent contractures in my wrists. As a result I was unable to independently remove my leg splints in the middle of the night and would wobble with splints on, perfecting the mummy walk, to make it to the bathroom. Despite these measures, I would still wake up sore and achy with morning stiffness and I took frequent baths before school, in order to loosen up my joints and make the school day more manageable.
|Being a pirate for Halloween to make
use of having to wear an eye patch.
Further complicating my childhood, I had cataract extraction surgery at 5 and 6 years old as a result of persistent Uveitis inflammation, and this resulting in requiring my mother to put in my contact lenses at 5 years old. This made sleep overs and play dates somewhat challenging. However, my mother would always sneak in and help me remove my contact lenses and then come back the next morning to put them back in, being as inconspicuous as possible, so I could still enjoy those slumber party experiences. My parents were always adaptive and creative, making the best out of lousy situations. One of my cataract surgeries occurred around Halloween and I had to wear an eye guard for protection for about a month. In order to still allow me to participate in trick or treating, I was a Pirate that year!
As a result of my many therapy appointments, I did end up missing out on some childhood experiences due to scheduling issues and physical limitations, however I was able to try many unique adaptive activities such as horseback riding, karate and adaptive skiing. Adaptive skiing bNew England Disabled Sports Program and I will most certainly talk about this again in the future. Life as a child with JRA can be challenging. A child’s life should be filled with play and fun and not doctors appointments and needles. However, I have met some of the bravest, most courageous children with JRA who are able to always find the joy and laughter in their lives despite the challenges JRA throws at them.
ecame a huge part of my life as my family and I headed up to New Hampshire every weekend to be able to participate in a family activity together. We all became actively involved in the
If you know someone or have a personal story of your life as a child with JRA, email me firstname.lastname@example.org to be featured on my blog this month.