Saturday, March 8, 2008

Kids Get Arthritis Too!

Today was our first meeting with the JRA task force (family support group) since Charlotte was diagnosed in October '07. Today's topic of anti-inflammatory diets was led by a nutritionalist from New Season's Market. It was fantastic, I will recap it in my f/u blog.

If you shop online @ New Seasons or would like to try (I shop online & then pick it up curbside, its fantastic!) I can save you $10 on your next order. Shop online, put in promotion code GARDENHOME during your online checkout.
NOW...I gave you $10, so can you do something for me? It's actually for you too... I need you to be an activist. Arthritis affects you too! Here's how...

46 Million

46 million Americans suffer from some form of arthritis. As the most common cause of disability and the third leading cause of work limitation in the U.S., arthritis has a significant impact on our nation’s economy. Arthritis costs our country $128 billion annually; $81 billion in direct medical costs. Nearly 19 million people with arthritis are forced to stop working within 10 years of diagnosis.

And now here's how it affects my family directly.
Kids Get Arthritis Too! Charlotte.
Charlotte is one of 294,000 children with a form of juvenile arthritis including juvenile rheumatoid arthritis, lupus, and scleroderma. You know her story, hit the tag "Charlotte" at the bottom of this page & you can read her journey since being diagnosed in October '07, just after her 2nd birthday.

The Arthritis Prevention, Control, and Cure Act has 205 bipartisan cosponsors in the House and 46 bipartisan cosponsors in the Senate, yet 46 million Americans are still waiting for Congressional attention.

The Arthritis Foundation urges the leadership of the House Energy and Commerce and the Senate Health, Education, Labor, and Pensions Committees to act now on S. 626/H.R. 1283.

The Arthritis Prevention, Control & Cure Act would:

  1. Strengthen arthritis public health initiatives, allowing more people to be diagnosed early and avoid pain and permanent disability;
  2. Expand the reach of evidence based self-management activities such as weight control and physical activity, which have been proven to reduce pain and reduce health care expenditures;
  3. Ensure that limited federal funding for arthritis is used in the most strategic manner possible through the formation of a federal interagency coordinating committee; AND
  4. Authorize a remedy to address the country’s severe shortage of pediatric rheumatologists.
From Oregon - Darlene Hooley is on the HOUSE HEALTH Subcommittee.
From Washignton - Patty Murray is on the Senate Health committee.
If you are from another state - please look up who is influential on from your state on these two committees. Please send them a letter. Its as easy as copying this email or a link to a letter is below. Tell them to support the Arthritis Prevention, Control & Cure Act.
Tell your congressman about Charlotte and how she has been battling this since the tender age of two. And for the last 5 months, what she has been through:
  • How FORTUNATE Charlotte is to have Dr. Kingsbury so close at hand, a pediatric rheumatologist. Not every child has a ped. rheumy in their home state or within 50 miles from where they live.
  • Tell your representatives how fortunate Charlotte is to be on our health insurance but how EXPENSIVE it is for joint injections, weekly shots of Methotrexate, daily oral steroid prednisolone, and daily eye steroid drops of pred forte. Think of the children who's parents work without health insurance, children who go without medication because they cant afford it.
And now let me paint a picture of what Charlotte would be like if she we didnt have health insurance & we didnt have access to an amazing/responsive pediatric rheumatologist:
  • Charlotte wouldnt be walking for sure. Absolutely. I have no doubt about that because for the 1st month (october '07), every morning Charlotte refused to get out of bed. It hurt for her to sit at the table & eat breakfast, she just wanted to lay on the couch until her joints warmed up and then she could start limping around the house for the rest of the day.
  • And her eyes... she could have been down the road of glaucoma, cataracts or worse, blindness.
  • BUT: We have been treating her eyes aggressively since November, we have had consistent opthamalogy exams & access to our pediatric opthamologist. AND we have a responsive, caring pediatric rheumatologist who diagnosed & treated her joints within weeks of her initial exam.
But. We are appreciatingly fortunate. And we continue to learn to live with this disease that needs more research, more support, more understanding.
PLEASE. Write a letter to your representative. Include a picture of Charlotte. Tell them what you know.

1 comment:

Lisa Milton said...

I'm looking forward to hearing more about the anti-inflammation diet. I've read some, some things about dairy and wheat, etc.

I'm not sure what to think.

Hope you had a good weekend.