Thursday, June 23, 2011

How do we fix ignorance?

I used to be one of those people who thought only adults, OLD adults got arthritis. I knew of 1 person with RA growing up and in my 7 or 8 year mind 30+ was old.

Fast forward to the late '80's when my hip pain began. I was 13 when it started and 14 when I had a bone scan. Before the bone scan I had a ton of x-rays and blood tests. I was sick a lot. No one knew why. One time rheumatoid arthritis was mention but my doc at the time insisted if I had RA it would show up on labs. Well, we know different now. I'm seronegative and not a crazy lady looking for pain meds ;-)

I came across this article on about juvenile arthritis. Go read the article and think about what it says. Did you follow the links that are in the article? No? Well I'll provide them for you. The first link they provide is link about osteoarthritis, OA. Remember, this is supposed to be an article about juvenile arthritis which is autoimmune. Did you catch that the link brought you to a site for a medication used to treat osteoarthritis? The second link brings you to a CDC page which is again about OA. I thought the article on was about JA?? Everything they're linking to is about osteoarthritis which a child CANNOT have. The arthritis CHILDREN have is AUTOIMMUNE. The final link in the article states, " .... Also try contacting the caring people of Limbrel to further assist you." Now, do you think it's a good idea to contact the makers of a drug that is specifically for OA about your newly diagnosed JA child? Me neither.

The article goes on to say,  

"Your child does not need to think that their juvenile arthritis is the end of the world. They can still have a full life where they enjoy running, bouncing, climbing and playing. Your child will love being able to lead a happy and full life without suffering from the pain of arthritis. They will be able to enjoy all of the things that are great about being a child and not have to worry about their juvenile arthritis affecting their life. They will thrive and be happy and healthy."

GOD, how I wish that was true. The reality is that Jordan thinks about her arthritis daily. Several times a day. Every morning and every night when she takes her medicine. Every month when she is sitting at the infusion center hooked up to Remicade she is thinking about her arthritis. When we're outside with sidewalk chalk, she often writes "I hate JRA." Even when we dyed eggs this year arthritis was on her mind.

She grins through the pain but I see it in her eyes. I see her swollen knees after a day of running around with her friends. I can't even begin to count how many shots she's had in the last 5 years. She's been on more medication then the years she's been alive. Who the hell do these people think they are? What world are they living in thinking JA is a walk in the park?? Obviously the writers of this "article" and don't know ANYTHING about life with juvenile arthritis.

Jordan does have a fairly normal life and for the most part she is happy. She is not healthy. She lives with the risk of the typical cold killing her. The medications she takes can give her cancer. It amazes me that "medical information" can be published with no research done to prove or disprove the facts stated in an article like this. This is the stuff we need to find and fix. It's no wonder people think our kids are really fine.

It's on the net so it must be true.


SandyBeach8898 said...

the only way we can is by speaking out, like you have done here. It is hard to have this invisible desease, but I know having a mom like you makes it easier for your daughter! Keep it up!

Anonymous said...

Didnt know you had been so busy blogging. Well done. :)

Jenna said...

Hi Jordan and Family
My name is Jenna and i came across your blog. I live with many invisble diseases. I was born with a rare life threatening, debilatating and degenerative bone disease, I have arthritis, Intertestial Cysitis, Burcitis, Tendonitis, and Fibromyalgia. Jordan is an inspirational hero, smilen champ and an brave warrior. She is a courageous, strong and determined fighter. I love it when people sign my guestbook.