Under Our Skin

uos-poster_letter

www.underourskin.com

In theaters June 19th, 2009.

A dramatic and frightening expose about how our corrupt medical system is failing to address one of the most serious epidemics of our times.

A gripping tale of microbes, medicine and money, this eye-opening film investigates the untold story of Lyme disease, an emerging epidemic larger than AIDS. Each year thousands go undiagnosed or misdiagnosed, told that their symptoms are “all in their head.” Following the stories of patients and physicians fighting the disease, the film brings into focus a haunting picture not only of our health care system and its inability to cope with a silent and growing terror, but also of a medical establishment all too willing to put profits ahead of patients.

Convince your local independent theater of the importance of running the film. Have interested theaters contact our distributor Ken Eisen of Shadow Distribution at 207-872-5111 or shadow@prexar.com for a week long run.

*** Updated to include YouTube trailer. ***

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Juvenile Arthritis: The Ultimate Teen Guide

Juvenile Arthritis

Juvenile Arthritis: The Ultimate Teen Guide (It Happened to Me)
by Kelly Rouba

“A self-help guide for youth, Juvenile Arthritis: The Ultimate Teen Guide will also be useful to family members, friends, and caregivers of those suffering from the disease. Readers get an overview of juvenile arthritis from the point of view of teenagers and their parents, and there are discussions related to diagnosis, symptoms of the disease, its history, and various related conditions.”

Be sure to check out this new book that was published recently.

More information can be found on the author’s blog at: kellyrouba.blogspot.com.

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Contact Your Members of Congress About Health Care Reform Today!

The following is an Arthritis Foundation Action Alert.

Health care reform now for people with arthritis!

Take Action!

Today, fellow advocates stormed Capitol Hill to let Congress know people with arthritis need health care reform.  To meet these advocates click here.
The Arthritis Foundation has heard from many of you about your challenges accessing and paying for health care. Your stories brought home the fact that there are 45 million Americans without insurance, millions who are underinsured, and the rising trend that paying for health care is contributing to upwards of half of all bankruptcies in the U.S.

Congress has been working on legislation to reform the health care system over this past year.  Starting this week, Congress is planning to discuss this legislation in committees and it will eventually reach the Senate and House floor.

It is very important that you tell your Members of Congress about the unique health care needs of people with arthritis.  If you are currently experiencing challenges accessing or paying for health care, please tell Congress your story.  If you don’t tell them about the problem, Congress can’t include a solution in the legislation.

Please read the Arthritis Foundation’s Health Care Reform Summary

Click “Take Action” to write your Members of Congress and let them know we need health care reform NOW!  Please feel free to use your own words in sending a message to Congress.

When you are finished telling Congress, don’t forget to share with us too. https://www.surveymonkey.com

Also, please visit a new section of our website with information and resources regarding accessing health care  and patient assistance programs.

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DisabilityLand

Disabiltityland Cover

In the spring of 2008, New York publisher SelectBooks joined with award-winning educator and author Dr. Alan Brightman to create DisabilityLand, “a groundbreaking volume that examines the landscape of disability from new, intimate and unusual viewpoints.”

DisabilityLand features NIAD artwork on the cover and throughout the book while “Brightman provides a tour through the landscape of disability where common and not-so-common sense co-exist and where people are seen for who they are rather than how they are stereotypically—and often pathetically—portrayed.”

Brightman explains, “kids and adults with disabilities live with, bump into, and wonder about people who’ve typically had little experience with others very different from themselves.” He adds, “I’ve been privileged to be involved in these interactions for many years. I’ve laughed at some, cried at others and was frankly flabbergasted by still others. Put disabled people together with non-disabled people, and all too often the unexpected happens together with the insightful.”

“DisabilityLand does not care about being politically correct. It doesn’t rely on euphemisms or platitudes. Rather, in stunningly frank language it conveys the experiences of disability in a candid and unprecedented way.”

The National Institute of Art & Disabilities (NIAD)

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Debilitating Pain of RA

I just received this comment on an older post, and think that it deserves more visibility – so, I am posting it here to my front page.

Thank you, Janet.  Very well said.

*****

In 2001 I was diagnosed with Chronic Regional Pain Syndrom(CRPS), and two years later I was diagnosed with Rheumatoid Arthritis(RA). Since then I have had many up and downs, surgeries, physical and psychological therapy, medication treatments, and still I don’t always feel that people understand what I am going through.

One day when I was down I wrote the following note and sent it to all my friends and family. I think it helped them understand that even though I may look OK that putting up that front helps me to take my mind off of the pain. I don’t want people to feel sorry for me I just want them to understand that there are days that I can’t be counted on to be my best.

Having a disability doesn’t make you disabled and although I can’t be as active as I used to be, (I always played sports) I always try to do what I still can.

One important thing I have learned is not to judge people by the way the look. I used to complain about people who have handicapped plates when they didn’t look disabled. Now I understand. So here are my thoughts on the “Debilitating Pain of RA”.

Debilitating Pain of RA

Many people don’t realize that we, the people living with Rheumatoid Arthritis(RA), don’t have to be in a wheelchair or use a walker to be disabled, the pain of RA does make you disabled whether it’s physically or emotionally. I realized this one week when my Remicade treatment had diminished from my system and the pain from RA ravaged my body.

I never knew what pain was, I mean real pain. Pain that makes you walk like you’re 100yrs. old, pain that attacks all your joints at once and makes you want to say “I can’t take this anymore!”.

I thought the pain I went through with CRPS was the worst pain I could ever have,(and I guess at the time it was) but that was just one knee, the RA pain went right through many joints in my body.

One day it attacks the knees, then it attacks the shoulders, the wrists, elbows and hands, next the feet, ankles and any joint that is vulnerable.

How can anyone say a person with RA is not disabled? Is it because you can’t see my disability? Or maybe my pain?

The day comes for the treatment and yes it does help the pain go away, but not away completely, it’s still there lying in wait until the medication diminishes from my body, then again pain will rear it’s ugly head then I will be in pain again.

Janet Richards 2008

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