Wednesday, April 16, 2014

Misrepresented...

We often lament that RA needs a really famous person to get the disease and that will help raise awareness. What I want to know is what if we already have a famous person that has RA but downplays the symptoms of RA and instead of raising awareness of the seriousness of this disease instead tells the media that they are "getting over the disease?"

I was diagnosed over 40 years ago and while things have changed in the medical profession (Pediatric Rheumatologists) it's starting to seem like RA is a dirty little secret that no one talks about because we can't package it up in a tidy bow and cure it. Don't even get me started on the commercials for the meds that have us trapsing through fields, or riding bikes, or for something a little different climbing a mountain (because I sure know after an infusion, I run right home and put my hiking shoes on...right after that 24 hour nap).

Why is it so hard to get realistic awareness raised about this disease? There are 1.5 million people with RA in the United States, right around the same amount of people with Lupus and that doesn't seem to have the same press. Most people are aware that Lupus kills, plain and simple...they get more funding from the government than we do. Why is it that people understand how serious Lupus is when RA just seems to be floundering in the background? We have people die too. Why is it our research dollars are WAY less? Why is it we have to send our kids to DC once a year to get them to let their congressman/woman know that kids get JA too? It's madness.

Two things brought up this post. Some of you that read my FB page know that my 12 year old daughter is exhibiting symptoms of JA. There is a long history in my family and that alone will probably play into her diagnosis. I'm hoping beyond hope that I am wrong and she has joint pain for other reasons. I called and scheduled an appointment with my orthopedic surgeon for my daughter, when I was two I was diagnosed by an orthopedist and after asking quite a few JA moms that's where they started with their child's journey.

Apparently the receptionist decided to talk to the doctors PA and the next thing I knew I was educating a PA straight out of school about RA and JA. I find that mind boggling...how could he have no idea about what Rheumatoid Arthritis and Juvenile Arthritis are? He kept asking me what do you want us to do? And my thought was, "aren't you guys the doctor?" 40 years and people still don't know about sero-negative JA, they don't know that you can have JA without swelling and still have damage, they don't know that family history plays into diagnosis, and they don't know that treatment needs to be swift and aggressive. He said to me "I'm not going to irradiate a child for no reason" and I thought "wow, if she really does have JA, xrays will be the least of her worries, how can you not understand this?" Again, mind boggling.

So I called my mom and bawled with her because we have done this before. Me as the kid and this time me as the adult. It's so hard not to be scared and wonder if my daughter is going to have to fight for the rest of her life like I have, it's horrifying knowing what she might face. Eventually I fell asleep and woke up this morning to this article.

http://www.dailymail.co.uk/tvshowbiz/article-2606065/Kathleen-Turner-opens-struggle-rheumatoid-arthritis-promotes-West-End-play.html

When Kathleen Turner was diagnosed with RA I was thrilled (not by the fact that she was ill, but because she was a face people knew). There would surely be awareness raised now. Imagine my shock when she quickly denounced the disease and said she was doing fine. Um, what? You're doing fine? How? So yeah, that was a short lived dream of awareness.

Today I woke up to the headline, Turner admits 12 surgeries in the last 12 years or something to that affect and surprise, I knew exactly how she was in her words "getting over the disease". Oh if only that was an option for everyone who suffers with RA especially the kids with JA who were diagnosed some as young as 9 months old.

What I would like to know is when is the person that represents my kind of RA, the a-typical (which I seem to find is more typical than the doctors think) kind where my RA didn't read the textbooks and likes to go rogue and act out in ways that are unusual? When will a person show up that has a bunch of co-morbidities and a handful of doctors? When will there be a person who represents those of us with more serious disease, someone who faces death a lot more than they would like. When is that person going to show up....

I know it's nice to want to tie up RA in a nice little bow and call it a little arthritis in my knee and put it up on the shelf like the unwanted step-child it is.

What I really wonder is if my daughter is diagnosed with JA, will she still be dealing with the same things I am 40 years from now? Something has to change because if she finds herself in the same situation 40 years from now we have no other excuse besides incompetence and there is no excuse for putting our children through this....

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