On The Road Again

On the road again, I just can’t wait to get on the road again….

on-the-road-again-susanne-van-hulst

Even though I’m singing this guy’s song in my head, its not the country music star that I am thinking about. Although Willie has always been known for going against the grain, and some say that is what we are doing as well.

Today I will be jetting across the country with my two kids to se their rheumatology and medical team in California. We have doctors in Illinois, but I’m told (directly from a pediatric rheumatologist actually) that if you put 100 different rheumies in a room with a single kid, you may get at least 100 different treatment plans. Therefore, I think finding the right fit for your kid is extremely important.

So off we go to California.

Funny thing is, I know people all over the country who come to Chicago JUST for the rheumatologists here. There are other families that travel all the way to Washington DC for the same reason. Many of those families have kids with Juvenile Myositis (one of the autoimmune diseases currently classified under the JA umbrella) and the two leading experts in JM are in Chicago and DC. But my kid doesn’t have JM- both my kids have forms of JA, and one is very, very complicated. This is why we go to a pediatric research hospital across the country. Because a doctor there specializes in the exact issues my child has, and being a research facility, we have treatment options open to us there that are not available elsewhere.

So here we go- at least 4 times a year… on the road again.

Its not always easy to schedule appointments either. With 300,000 children affected, and only 250 board certified specialists to treat them, we feel lucky every time we are able to be seen. According to the American College of Rheumatology, access to these specialist is growing increasingly more difficult, as the number of children affected continues to rise. Many states don’t even have a SINGLE pediatric rheumatologist.

This fact makes Section 5203 under the Patient Protection and Affordable Care Act  so important. It authorizes a pediatric subspecialty loan repayment program that would entice doctors to pediatric rheumatology and other underserved areas of medicine. Its something I have advocated for under the Arthritis Foundation’s Ambassador (advocacy) program, and something I think about every time I travel more that 1000 miles to access the right care for my child.

Next time we are “on the road again,” I would love for it to be just for fun, but for now this is what we will do. We will travel halfway across the country to a vacation mecca, just to see the inside of a hospital for most of the week. But don’t think I am complaining. I will be thrilled that we have that opportunity, because we are the lucky ones who actually have access to superior care, and get to utilize these very scarce resources. I wish that EVERY child who needed to, could.

If you would like to help, contact your congressmen, and let them know the pediatric subspecialty loan repayment program is important to you!  Or better yet, become an Arthritis Ambassador, and help us with advocacy year round!

Our kids, ALL our kids deserve it.

 

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Comments:

  1. Good luck with the trip Kim. That sucks, I hate that you guys have to travel so far for treatment.
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    • Well, it is hard, I wont lie, but its wrong to complain too much when we are in SoCal in 60 degree weather today, and it is snowing and bitter cold at home 🙂 We try to look on the bright side, and make the best of it too. Today we ventured out just to eat (somewhere that was on Grant’s bucket list) and from there just went back to the hotel to rest. We get the bonus of being close to the hospital, but looking out our window at the Santa Monica Pier and the Pacific Ocean. So even though he is worn out, we still can enjoy a little bit from the change of scenery, and tomorrow, he’ll see some of the best docs in the country. We are lucky that we are able to travel (even though travel days, and the day after is hard) many kids can’t!

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