Monday, July 23, 2012

St. Louis

    Last night, I got back from St. Louis, Missouri, where I attended the juvenile arthritis conference, which is run by the Arthritis Foundation. (I will post the link to their webpage at the bottom of this post.) It was a really good experience. I made several friends with JA (or with siblings who have JA) and met a lot of families. I was with my younger sister and my dad, so while my younger sister and I were in our grade-appropriate activities my dad was in the parent sessions, learning about medications and treatment options. It was really great to talk to some other pediatric rheumatologists for more perspectives and to meet other kids dealing with the same horrible condition.
    The conference was definitely helpful, and I'm coming back with much more information and even hope. Next year, the conference will be in Anaheim, California, July 18-21st. I would strongly recommend that you attend if you have a form of juvenile arthritis, because it is worth it.
    I was somewhat surprised that a lot of the kids have the same story as me of being misdiagnosed. It was sort of a relief to know that there are people who understand and people who I can relate to. At the same time, it is quite tragic to think that there are so many kids that have to go through this. It's not right.
    By donating to the Arthritis Foundation, you can help with research and funding for medical students going into pediatric rheumatology (it's one of the lowest paid specialties). I would strongly suggest that you consider this if you are in the financial position to give.
    I know this is a short blog post, but I'm working on several others as well right now, so more will be out soon.
    Thanks!


Love,
Rachel
Arthritis Foundation Webpage

5 comments:

  1. i havent been to a AJAO conference in so long. ive alway s had a good time when i did. idk if im too old now, given that im 24.. but maybe ill catch anaheim next yr (: glad you had a good time! those conferences are always fun imo

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  2. That's really good you went! I was going to go but the timing wasn't good for me. Anyway, great to know you met a lot of kids: I bet you've met a few friends of mine. I met them through an arthritis camp.

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  3. Hi Rachel! My name is Kenzie and I've somehow stumbled across your blog and couldn't be happier! :)

    At 15, I was diagnosed with Juvenile Enthesitis Related Arthritis that has progressed throughout the past year. (I'm now 16.) I've devoloped a skin disorder, dealt with some anxiety and depression, and in the near future am having an MRI to look more into things like Spondylitis.

    It's been a scary ride and I still struggle to stay positive at times, but I know God has a spectacular plan for me - and for YOU, too.

    SO glad I've come across your blog, hope we can chat soon!

    Thinking of you girl! Stay strong!

    XO,
    Kenz

    lifeaccordingtokenz@gmail.com

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  4. Hey Ladies,
    I know its hard to grow up with JA, I was diagnosed at 2, and am now 29. I think your blog is amazing and could help lots of kids with JA. One of the things that helped me was going to camp for kids with rheumatic conditions. It is great to build a support group of people who can understand what you are going through and be able to be yourself for a week were people truly understand you. The camp that I go to is in Indiana. You can always call your local Arthritis Association and see if they know of any camps in your area.Keep up the great blogging! Emilie
    Em_nin99@yahoo.com

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  5. Dear Rachel,

    You know who I am. I am the "old" lady with JRA from NYC, disgnosed over 40 years ago. I am still here! I went to University, married, had a family, worked at so many jobs, including physically challanging ones. And while I do ache from time to time, sometimes terribly, I am still here.
    Stay positive, dear heart.

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Feel free to comment or shoot me an email - thekidwitharthritis@gmail.com I'll try to get back to you either way!