Saturday, May 2

Living With Arthritis: 300,000 Kids


There are approximately 300,000 children in the United States that have some form of arthritis, which is diagnosed almost anytime between the ages of 2 and 16. The are several types of juvenile rheumatoid arthritis (JRA) ranging from systemic JRA, which affects the whole body, to oligoarticular JRA, which affects four or fewer joints.

My daughter was diagnosed last year. She has juvenile rheumatoid arthritis in both ankles, one hand, and some limited range of motion in other joints. Still, we're grateful she was diagnosed, as Nevada is only one of nine states in the U.S. that doesn’t have a pediatric rheumatologist.

Arthritis and BloggersUnite.org

When you consider all of the causes, ranging from AIDS to World Hunger, arthritis doesn't really register on a large scale. But social media, unlike SEO, is not all about the numbers. It's about engagement, connecting people with common interests whether those interests are altruistic or something as simple as a celebrity. It's about how information and action spreads.

For example, it helped one blogger find a greater forum for reporting on Arthritis Walk Atlanta, which was held today, or a few more bloggers interested in writing about Juvenile Arthritis and Kelly Rouba's new book, in which she shares her own story and the stories of various kids, teens and young adults who suffer from arthritis.

Awareness is extremely important for kids and parents because the earliest symptoms are so easily dismissed or misdiagnosed. Very often, the symptoms only include a light rash and swelling around a single joint, not all that dissimilar from a common sprain or suspected bug bite. In fact, last year, even Jennie Garth, a former "Beverly Hills, 90210" actress, shared how a "mysterious illness" afflicted her 2-year-old daughter. Eventually, after significant emotional distress, they learned it was JRA.

I learned about Jennie Garth's story and Kelly Rouba's book through BloggersUnite, which reaffirms some of the decisions we recently made for our own daughter. And perhaps, some parent with a child who has a mysterious illness will learn about JRA here too.

JRA and Treatment

Given that our daughter was born three months premature, the sudden diagnosis of JRA was a surprise. After all those months in the hospital and regiment of medications once she was home, the last thing any parent wants to learn is that the light of the tunnel (when all things seem normal and the medications phased away) is that there is another tunnel at the end of the light.

For us, it was the not-so-easy to make decision regarding Enbrel, a tumor necrosis factor (TNF) blocker that blocks the action of a substance your body's immune system makes. In other words, the trade off of taking Enbrel can make you more prone to getting infections. In other words, if your child even has a hint of a cold, you have to immediately stop treatment. (The alternative was methotrexate, which is primarily used for chemotherapy.)

Still, since Enbrel is a relatively new treatment for kids, we took a one-day trip to the Mattel Children's Hospital at UCLA to meet with Dr. Deborah McCurdy, who is the head of the pediatric rheumatology department there, for a second opinion. After the exam, she spent more than an hour with us, carefully and conscientiously weighing our options and noting that without treatment our daughter's overcompensation could lead to lifelong complications such as a curved spine.

Our daughter has been receiving injections for about three weeks now, and has already shown dramatic improvement. Normally, the expectation to see signs of improvement is six weeks. We're grateful, and hope sharing this might help another parent some time.

Is there any other takeaway? I think so. If there is a common theme with all these stories, it is that you don't have to be afraid. As fear is always related to something that hasn't happened, it only stands in the way of taking action. So for parents whose children face JRA, learn as much as you can, seek out second opinions, and never let fear immobilize you from taking the next step.

6 comments:

Mrs Mo on 5/2/09, 9:23 PM said...

Hi Rich-
I'm Hilary, Kelly's publicist. Thank you for sharing your story and joining our to help educate people on JA.

I'm so happy to hear your daughter is doing better with her treatment. As Kelly and Shaun-Marie (the new mom with JA) have said, the earlier and more aggressive the treatment, the better. When Kelly was first diagnosed, doctors were afraid to try anything too strong and now she is in a wheelchair because of it.

Thanks again and best wishes to you and your family and your adorable little girl.

Manifest Green on 5/3/09, 4:44 AM said...

Hi Rich! Thanks for commenting on my site. I'm sorry I wasn't able to write more up due to time, but I am researching more and will leave a longer post in the very near future. I am actually more shocked that not one other person decided to do anything on the event yesterday. I am hoping to find pictures and video of all of it to post. I wish I could have been there myself, but unfortunately my job didn't allow it.

Rich on 5/3/09, 9:37 AM said...

@Hilary,

We really appreciate the note. Awareness is often the first step to taking the correct action. We commend Kelly for writing and promoting her book. It will certainly help parents.

@Manifest

Success is sometimes best determined by the size of our hearts rather than the number of them. I was thrilled to see your video post.

I cannot complain about the interest. Bloggers just completed two rather large campaigns (Earth Day and Hunger & Hope) and this event was very local (one of ten I was using as an example for local nonprofits). We had considerable success with a walk held here in Las Vegas where our daughter was a direct participant.

I cannot thank you enough for participating (online sometimes reaches just as many as in person). I was especially touched by your contribution because I know you were doing it for others.

All my best,
Rich

Kelly on 5/6/09, 7:58 PM said...

Hi Rich,

I also wanted to thank you for writing about JA and mentioning my book. What pains me just as much as the disease itself is how unaware the general public is of the fact that children can get arthritis. It also frustrates me that the mainstream media continues to ignore this disease. Perhaps they don't realize how severely children can be affected or that many treatments (like biologics) only work for some patients and, even then, stop working after several years. We will just have to continue our mission to create awareness in hopes that better treatments will be made available. Thank you again for your support!

Kelly

Rich on 5/7/09, 7:01 AM said...

Hey Kelly,

Thanks so much for the comment. What you are doing is amazing. For that reason, as well as how our family personally touched by this issue, it's easy.

I think there in might be the answer. To motivate people, they need to understand the personal connections they have to a specific topic. The unfortunate irony is that the more people who are touched, the less likely the media will cover it en masse. They tend to avoid common.

I'm sure it will not be the last time we cover it. And I very much look forward to keeping track of your efforts. Good work deserves attention.

Best,
Rich

Kathy Gilbert (Taylor) on 2/6/13, 8:52 AM said...

So happy your daughter is responding to the meds. I remember a classmate from elementary school (we're talking late 1960's) who had to use crutches periodically in the winter because of juvenile arthritis. She was a sweetie. Back in the day, not much could be done. We can never give up on finding treatment for disabilities such as these. Thank you for sharing your story.

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