Tuesday, March 11, 2008

Push the APCC act

(I edited the letter - our 2 senators have already co-sponsored the bill, so I am urging them to push it forward. representative hasNOT co-sponsored)

Reliving Charlotte's LONG journey these past 5 months in order to drum up support from our elected officials is emotionally exhausting & positively hopeful. I wrote tonight, tomorrow they will be sent. And then I want to recap the "anti-inflammatory" way of living/eating helpful information that we learned from the New Seasons Nutritionalist.

Did you know that classes are offered by nutritionalists for FREE at New Seasons because they dont believe you should be charged to talk about eating right!!! How great is that!?! Charlotte & I spent 2 hours at New Seasons today - and she went pee pee & poo poo (@ 2 separate times) at New Seasons in a BIG POTTY!!! I think we have clicked... i told her I am seeing a puppy in our near future :) The girls were very excited to hear the news! It will be good for Charlotte's body to have a puppy to chase around :)

My name is Erika & I am the mom to 2 ½ year old Charlotte who has Junior Rheumatoid Arthritis.

I urge you push the Arthritis Prevention, Control & Cure Act (S. 626/H.R. 1283) forward into action.

Charlotte is our 3rd & youngest daughter & we live in 111. She is one of 300,000 children in the U.S. that have arthritis & she’s one of 46 million Americans that are affected by a form of arthritis.

We believe that the APCC act could make a huge difference in Charlotte’s life & many children like her. There is a tremendous amount of suffering, medication & time allotted to a disease that deserves more research & eradication.

Arthritis is an autoimmune disease that has an unknown cause. Charlotte was diagnosed just 5 months ago, after her 2nd birthday with JRA. Charlotte started limping & falling easily. Our pediatrician pushed us quickly through tests to find an answer with x-rays & blood work. The results revealed normality in the x-ray but her blood work proved her ANA positive & the pediatric rheumatologist confirmed the diagnosis of Junior Rheumatoid Arthritis.

The arthritis spread fast. Within 2 months, 4 joints were affected. We treated these joints with injections & the results were very much like the tin man in The Wizard of Oz after he got doused with oil. Charlotte was able to bend & move & function like an energetic 2 year old.

In an arthritic body like Charlotte’s, the brain is telling her body that she needs more white blood cells to fight the “illness” that doesn’t exist. If left untreated in her joints, the white blood cells would accumulate & lead to immobility & possible joint damage or permanent disability. Treating joints with steroid injections is so crucial & timing is key to avoid possible permanent damage.

The eyes are considered another pocket of space for white blood cells to congregate. Charlotte couldn’t get injections in her eyes where the arthritis went immediately & so she is on a weekly shot called Methotrexate to help keep arthritis at bay in the joints AND the eyes.

She has been battling “iritis” or “anterior uveitis” since November (the white blood cells are in her iris area on the outside of the eye. Her pediatric ophthalmologist is able to actually COUNT the cells through a slit lamp).

We see our pediatric ophthalmologist weekly to every other week & when aggressive steroids (oral liquid in the morning & night as well as hourly eye drops for 2 months) weren’t making a difference, we recently spent 3 days at Portland’s Emanuel Hospital, where Charlotte was hooked up to an IV machine & was pulsed with a high dose of steroids in order to FINALLY get the uveitis under control.

Along with Charlotte's weekly shot of Methotrexate, she is still on steroids, slowly tapering to ensure the cells don’t make a comeback & we continue to see our pediatric ophthalmologist weekly.

Accessability to doctors is crucial to arthritis patients & the APCC act would support more doctors in this field where they are needed. We are lucky to have a pediatric rheumatologist who is accessible & is a teammate in every sense of the word with our pediatric ophthalmologist.
This is a battle we continue to fight, in her joints & in her eyes. It’s a battle that she will continue to fight for her entire life unless more research can be done.

On June 8th, I invite you to walk with Charlotte & our family for the 3rd annual CARRA walk/run. This is a benefit for the Childhood Arthritis & Rheumatology Research Alliance. All proceeds go directly to CARRA to help fund research to find the cause and cure of Arthritis and other Rheumatic Diseases in children.

Will you join our family? We would love to walk with you!

Please help Charlotte & the millions of Americans living with arthritis by pushing the Arthritis Prevention, Control, and Cure Act to mark up!
Thank you,


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