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Karen Dolan

Karen Dolan

Posted: May 26, 2010 02:05 PM

World MS Day-Give Us Jobs or Give Us Wheelchairs

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Today is World MS Day. MS, as in Multiple Sclerosis. MS is a disease in which the immune system mistakenly attacks the myelin coating of nerve fibers in the central nervous system. I have had MS for at least 13 years. I am a Fellow and Project Director here at The Institute for Policy Studies. My job is to inform. Today, I'd like to inform you about MS. Here are some facts from MSFacts.org:

* Among young adults, MS is the most common disease of the central nervous system.
* More than 400,000 people in the United States have MS.
* An estimated 2,500,000 around the world have MS.
* About 45 percent of the people with MS are not severely affected by the disease.
* Diagnosis of MS is usually between 20 and 40 years of age.
* MS affects more women than men, with a ratio of 2:1
* About 85 percent of those who are newly diagnosed have the relapsing-remitting form of MS.
* Without disease-modifying therapy, about 50 percent of those diagnosed with relapsing-remitting MS will become progressive at 10 years.
* Without disease-modifying therapy, about one-third of those diagnosed with relapsing-remitting MS will be using a wheelchair at 20 years.
* Fatigue is one of the most common symptoms of MS.
* MS is a progressive disease for which there is not yet a cure.

For many years, none of my colleagues knew I had the disease. It is hard to detect unless debilitating symptoms such as loss of mobility occur. A few years ago, I began to use a cane to walk. I began daily injections of a disease-modifying drug called Copaxaone. Last year, my colleagues and friends helped me to buy a WalkAide which my insurance company, CareFirst, refused to cover. Now, I am on a new "miracle drug" Ampyra, that enables me to walk almost as a "normal" person for several hours a day. I am one of the lucky ones.I have a job and health insurance. I am beating MS rather than MS beating me. If there were universal healthcoverage in the U.S., most of us battling MS would be winning with access to supports such as those I mention. Today, seek out a friend, family member, colleague or acquaintance with MS. Tell her about Amppyra. Ask him if he needs help raising money for a WalkAide or medication. Write to you Senator and Representative and demand Universal HealthCare for All. Tell them to pass a good public jobs bill like The Local Jobs for America Act so that all of us can have decent wages and access to healthcoverage and prescription drugs until we have a Single Payer Universal Healthcare system in this country. We don't need to be in wheelchairs, we need good jobs, good wages and quality affordable healthcare for all. Then we will have beaten MS.


 

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11:51 PM on 05/27/2010
Many many people are getting relief of MS symptoms through unblocking of their neck veins.
See http://csvi-ms.net/en "This website will serve as a platform for the hypothesis of the relation between "Chronic cerebrospinal venous insufficiency" (CCSVI) and multiple sclerosis (MS). The pattern of CCSVI was described by Prof. Zamboni. This website will give an overview and track the development, especially scientific publications and media coverage. As discussion forum we recommend the CCSVI http://www.thisisms.com/forum-40.html. "
11:51 AM on 05/28/2010
Ken, thanks! this is important information,I have been trying to follow this too. thank you for the links. Last night the House of Representatives stripped out emergency funding for State Medicaid (FMAP)to help devastated state budgets respond to the health needs of low-income people. For all of us to benefit from such important medical advances, we need to fight for HR 4213 and to make sure that FMAP and COBRA subsidies are PUT BACK into the Senate version of this Jobs/Extenders Bill!
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Tamar Abrams
communications consultant to nonprofits, writer
05:31 PM on 05/26/2010
Karen, I watch you fight this disease on a daily basis and know you are winning because you are a productive (okay, brilliant) staff person at IPS, a loving and nurturing mother and a contributing member of society. It seems that the cost of ensuring you continue in those roles is far less than the government -- and taxpayers -- would pay if you were to become unable to function in those roles. Our nation is so short-sighted when it comes to health care and disabilities. I am so proud of you for fighting for everyone who has MS and for smacking MS in the face every minute of every day.
03:23 PM on 05/26/2010
My (brilliant, hardworking, productive) family friend has MS, and now is unable to put his many skills to use because of the disease. Thank you, Karen, for raising awareness.
02:46 PM on 05/26/2010
The point is that we will live with dignity and create a healthy and productive society when we achieve a national publicly-financed universal health program that benefits all of us equally. I hope that you will visit pnhp.org to learn more about what such a program involves and that you will join healthcare-now.org to get involved in making this a reality.
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Karen Dolan
Fellow, Institute for Policy Studies, my views exp
03:24 PM on 05/26/2010
Yes! What she said! ;-)
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02:18 PM on 05/26/2010
Everyone with a disability wants universal healthcare. What is the point of this article? Nothing new here.
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Karen Dolan
Fellow, Institute for Policy Studies, my views exp
02:29 PM on 05/26/2010
For me, the point is that without it, many of us will be relegated to wheelchairs, unable to work, care for our families. MS hits young people, productive, creative assets to our society. We lose alot when we lose them. It t doesn't have to be this way. Today, World MS Day, seemed like a good time to remind folks of this