Thursday, September 15, 2011

Dear President Obama, Please Talk About Arthritis

When I was at the JA Workgroup meeting on Monday, there were three pediatric rheumatologists in attendance. Between them, they estimated that they diagnose 10-12 new children with arthritis every month. I don't know about you, but to me that seemed like a huge number of kids for only three doctors in one state! How can all those kids be expected to deal with pain and fatigue at such a young age, when I could barely manage it at age 25? And, to be honest, I still struggle with at age 28. It hardly seems fair. 

So what can we do to help those kids? One thing we can do is ask President Obama to talk about arthritis. President Obama and Secretary of Health and Human Services Kathleen Sebelius have made prevention and wellness a major policy focus for the nation, which is really awesome. But, when they talk about chronic diseases, they often speak of heart disease, diabetes, and cancer - but fail to mention arthritis. 

While I am not at all trying to downplay the seriousness of the other chronic conditions, it does seem unacceptable to me to leave out the nation's most common cause of disability. Arthritis affects 300,000 children and an estimated 50 million adults in America - which means that 1 in 5 American adults are dealing with some form of arthritis. Not to mention all the spouses, parents, siblings, friends, and other family members who are also affected by their loved one's arthritis. We need to ask President Obama to make arthritis a national priority because it affects so many millions of Americans.

The kids are asking:

And so am I. If you visit the Arthritis Foundation's Legislative Action Center, you can send a letter to President Obama and Secretary Sebelius in only a few minutes - the letter has already been written for you. However, I learned at Advocacy Training that your letter will be more likely to have an impact if you include your personal story (rather than using the form letter). So here is the letter that I sent:
Dear President Obama and Secretary Sebelius:

Just three years ago I was a healthy, active, 25-year-old dual degree graduate student, simultaneously pursuing a law degree and a masters in environmental policy at the University of Colorado. I had a plan: to graduate, to get a job working on climate change and energy policy, and to help change the world.

But then my world changed when I was diagnosed with rheumatoid arthritis (RA). I had to take time off from school to find a workable treatment. I had to reduce my workloads to deal with the pain and fatigue. I felt like I was too young to be dealing with such a disease, but since then I have learned that arthritis affects one in five American adults and 300,000 children.

I am pleased that you have dedicated time and resources to addressing the increasing burden of chronic diseases, like heart disease, cancer, and diabetes. However, I strongly believe that arthritis needs to be included in this list. Arthritis is the nation’s most common cause of disability and costs the U.S. economy $128 billion each year.

Arthritis also places a burden on millions and millions of individual Americans – including those suffering from arthritis and their loved ones. It has placed a burden on me, my husband, my family, and all of my friends. It has slowed my progress towards reaching my goals.

I still plan to reach my goals and help change the world – I may have arthritis, but it doesn’t have me! Only now I will need your help to reach my goals. I will need medications and therapies and research and support to help manage my arthritis. I will need people to be aware that children and young adults can get arthritis too.

I believe arthritis should be mentioned whenever publicly speaking about chronic disease prevention. Please, President Obama, talk about arthritis.
I decided to send an email and print and mail the letters. This may be a small effort on my part, but it is one tiny step towards changing the world - and that makes me feel good.

I hope you will take the time to speak out too - and please feel free to use any piece of my letter that might resonate with you! Please click here to send your own letter.


Unknown said...

Awesome letter. I'll send one too.

- Lauren

~Mariah~ said...

DIKDIK: Many thanks. ~;o)