Brave New World

I was four when I had the first symptoms of Juvenile Rheumatoid Arthritis (JRA). I was also four years old when I was admitted to hospital and placed in isolation for three weeks with a suspicion of rheumatic fever. I don't remember much about that hospital stay, except being alone in a bed with white bars in the middle of a very white room with fluorescent lighting. Even the door was white and had a window in it.

I was nine when I was finally diagnosed. When I was 11, I spent three months in a rehab hospital. That was where I learned that crying doesn't change anything. It was also where I learned to suck up being stuck with needles - every Thursday after rounds, I and other kids with JRA would line up outside an office and one after the other go into have our swollen joints tapped. This involved sticking a needle into the joint - without the benefits of local anesthetic - and drawing out the fluid. The nurse was usually too busy flirting with the doctor to hold our hand. I got sent home on gold injections and they help for a while, but I soon developed side effects and had to stop taking the medication. There were no other options for treatment.

I was 12 when my JRA went systemic and almost killed me. My fever was so high for so long that I had hallucinations. I remember going to the daily x-ray of my chest to check on the progress of the pneumonia and what they told me was a growing heart and barely being able to sit up unassisted for the seconds it took to take the x-ray. After the worst crisis was over, I remember sitting in a wheelchair with a blanket over my knees in the hospital’s garden. It was spring and I remember thousands of blossoms on the apple trees. I also remember learning to walk again and how two steps on the pretend staircase in the physiotherapy room seemed insurmountable.

I was 13 when the JRA spreads all my joints and they put me in a full body cast to try to treat what was happening in my hips. Instead of helping, they fused and I spent years lying in a hospital bed waiting for custom-made hip replacements made in England. I was 16 when I had both hips replaced, got a power wheelchair and went home.

More than once, I have had doctors tell me that a child getting RA today would have a completely different experience. So would adults - the chances of ending up in a wheelchair are now very low. The treatment options have grown by leaps and bounds, especially in the last 10 years and now it is rare to see gnarled hands with fingers bent in impossible angles.

15 years ago or so, I attended a forum with a speech given by Dr. Edward Keystone. I remember him talking about the approach to treatment at the time being akin to carpet bombing the immune system. And I remember him saying that researchers were trying to develop the equivalent of a targeted missile. Last November, I went to another forum with a speech given by Dr. Edward Keystone and it had the best title: The Most Exciting Time EVER in the History of Treatment of Rheumatoid Arthritis (webcast here). In it, he talked about all the different targeted missiles that are now on the market, about the ones currently in development and about how the research goal now is to develop treatment that can turn off RA before it happens.

I never thought this kind of miracle would happen in my lifetime. That it has is due to the committed doctors and researchers who work to find such treatments and it is due to the money raised in part by The Arthritis Society. My life is possible not just because your taxes are being used to fund life-giving and life changing medication, but because a lot of someones decided to donate to The Arthritis Society. The fact that children who get JRA today will not have to go through what I did is because of donations to The Arthritis Society. And that is why I have decided to put a button on my sidebar that leads to their donation page. Because every little bit helps and maybe there's someone out there who would feel it's the right place to send their money.

March is Juvenile Arthritis Awareness Month in Canada. And I will spend it celebrating miracles.


Anonymous said…
What a wonderful, inspirational, sad, humbling post, Lene. Thanks for reminding us to be mindful of all the miracles in medicine happening in our lifetimes. Take care
Colleen said…
No excuse for that nurse not comforting you...nor lining kids up to be miserable, waiting, for the doctor's convenience!   We are still trying to get them to more reliably treat kids like people!
Kitten said…
Happy celebration, lady.  I'm still waiting for the regeneration.
AlisonH said…
I take great comfort in your celebrating for the sake of those coming up behind you. And how cool that it means so much to him, too.

My daughter is a researcher working on immune issues. The funding is very thin. Thank you for doing that!
Anonymous said…
Thanks for reminding me why my job here at the Arthritis Society is so important.  Your storey has given motivation to me and I am sure all thsoe who hear it. 
Ms. M said…
Hi Lene,
I am 39 and started having symptoms of RA at age 8.  They came and went and I was dx just as I turned 10.  My path has also been filled with meds, surgeries, more meds.  I lost an eye, but avoided most deformities.  I'm making the most of my life.  I often feel like I'm the only one out there who was dx with JRA... adults seem to just not post about their experiences.  It never goes away.  So thank you for posting about your life. 

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