I know that I usually post free stuff on my blog on Fridays. However today I am taking a break from making and sharing freebies to focus on something that is very important to me: Juvenile Arthritis.
What is Juvenile Arthritis? Juvenile Arthritis is NOT the “arthritis” that most people think of when they hear that word. Juvenile Arthritis (aka Juvenile Idiopathic Arthritis or Juvenile Rheumatoid Arthritis) is an autoimmune disease that causes the body to attack its own joints. It is NOT the same arthritis that your grandmother has. It causes pain, swelling, inflammation and deformity. Some forms can attack organs. It also can attack the eyes, causing blindness.
Why do I care about Juvenile Arthritis? Because my daughter, Esella, was diagnosed with JA just after her second birthday. One morning, she woke up and could barely walk. You can read her story HERE. Now at age three, we have to give her a weekly injection at home of a chemotherapy medication to help suppress her over active immune system. This is unacceptable. Juvenile Arthritis is unacceptable.
What is the treatment for Juvenile Arthritis? Unfortunately, Juvenile Arthritis cannot be treated with just a couple Advil. Treatments vary depending on the type and severity but most children require weekly injections of various types of medications or even monthly infusions (think Chemotherapy) of even stronger medications. My daughter is currently receiving a weekly injection of Methotrexate, a chemotherapy medication, to suppress her over active immune system. We will find out in mid May after an MRI (my 3 year old needs to be sedated so that she can have an MRI of her hands to determine the level of inflammation) whether we will need to start her on an even stronger medication or if her current medication is working. Other treatments include steroid injections (E got one in her knee just after her diagnosis. She again was sedated for this) and oral steroids. In addition, many children may require physical and/or occupational therapies (my daughter had BOTH last year). Because JA can effect the eyes, children have to be watched closely by pediatric ophthalmologists as there often are no symptoms until there is damage.
Why should YOU care about Juvenile Arthritis? Well…why wouldn’t you? 😉 Seriously though…if you are wondering WHY you should care, take just a few minutes to watch this short video I made.
How we are fighting against Juvenile Arthritis: We will be taking part in the Arthritis Foundation’s Arthritis Walk for the second time this year on May 5th. Last year was our first year and we ended up raising quite a bit of money (over $17,000). The money raised go towards funding research for better medications and hopefully one day a CURE for this disease. The money also helps fund educational programs as well as community programs such as camps for children with rheumatological diseases and special events dedicated to the cause such as Juvenile Arthritis Education Day (which we just attended last month). In addition to raising funds, we are out to raise AWARENESS and educate others about this disease. You have no idea how many times I have had to explain how Juvenile Arthritis is NOT the arthritis your grandmother has and that my daughter can’t just take an Advil and move on. This is a serious autoimmune disease with no cure.
How YOU can help: If you have found my blog helpful, perhaps you might share this blog post with your friends and family. This can help spread awareness about JA which is our #1 goal. You can also help by making a small donation in my daughter’s name, if you would like. You can do so by going HERE. Every penny counts 🙂
Because, doesn’t SHE deserve a cure?
Thanks so much for taking the time to read and watch my video! Happy Friday!!
Cheers!
What a wonderful video Katie, and congratulations on raising so much money and awareness for JA. My family and I have participated in activities here in MN for JA, so I know how important they are to helping with research. Good luck to you, and God Bless Esella and your family!
Thank you Casey!
Beautiful video, beautiful post. My prayers are with your family. I live too far away to walk with you but know I’ll be thinking of you during the walk time..
Thanks Rebecca!
How inspiring!!! I’ve had JRA since I was 18 months and have recently been helping another family whose daughter was just diagnosed. We are doing the RA walk in June 🙂 Best wishes!!!
Lorrie recently posted..Ashley’s Arthritis Fighters Fundraiser Walk!!!!
Thanks Lorrie! Good luck to you! 😀
Hi Katie,
I happened accross your website as I was searching for information on Juvenile Arthritis. My daughter, who is now almost 9, has JIA. Just like your daughter, she presented at 15 months, and limped for 6 months on a swollen knee. Overnight, with injection, that was almost cured, however at just before 3 years old she was affected by uveitis. She has chronic persistent uveitis, and luckily after many years of NSAIDS, methotrexate, and 3 years of infliximab infusions, she is stable. She continues with leflunomide daily, and infliximab infusions every 6 – 8 weeks, but she is active, healthy and otherwise unaffected. I am attaching a video that she was involved in, for a study in Canada called LEAP. She is the hockey player in the video, however it is a great production to encourage parents of children with JIA, that keeping their children active is a good thing, and also is hopeful that despite the challenges of JIA, these children with the research, and medications available to them today and going forward have a much better chance!
http://www.youtube.com/watch?v=EEcstaUcXX4
Good luck to you and Estella! I was touched by your video, as it was so familiar to me.
Lorna