Fw: Think of these MS statistics and the response of the Mass Dept. of Public Health

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Sent: Sunday, March 21, 2004 8:51 AM

Subject: Think of these MS statistics and the response of the Mass Dept. of Public Health

The NMSS writes that:200 people in the US hear the gut-twisting words: "You have MS" every WEEK.That means that 10,400 people hear it every YEAR.People with MS are not dying from the disease as quickly as they are being diagnosed. If the average person is diagnosed in their mid-20's or so, and lives for another 50 years, it appears that maybe the number of people with MS is higher than the current estimated figure of 400,000 people put out be the NMSS. Montel , whatever you think of him, has been saying this constantly since his diagnosis.Maybe this is the time that we MUST demand that the ATSDR (grants for clusters) and CDC (keeps stats on MS deaths) make MS surveillance a more serious issue, and that a registry be put in place that would allow us to estimate the incidence of MS in communities like East Boston and Winthrop. The Massachusetts DPH responded to me by letter, and has informed me after reading my thesis, that it is because no registries exist that they are limited in their ability to reach a consensus on the cause of the disease.Ironically, because 400,000 people lived or worked near the World Trade Center on 9/11, the New York City DPH and other agencies want to find these people to track the long-term health of this group of people. They are establishing a registry specifically for this at www.wtcregistry.com. Please visit the following website as they are the only organization I know that is looking for a Nationwide Health Tracking Network to try and link chronic diseases (responsible for 70% of the deaths in the US) and the environmental exposures that are possibly relevant to all types of disorders including neurological diseases. http://healthyamericans.org/ "preventing epidemics;protecting people"A brilliant female scientist at MGH reminded an audience of people attending an Autism and the Environment lecture that "Epidemics are ONLY the result of environment." I still believe in all my heart that the area I grew up in has an "epidemic of diseases like MS, ALS, Cancer, etc."Change happens in very small increments, but each one of us can take the smallest action to help along the way. It is the future for not only ourselves, but our children and grandchildren after us.Thanks,Robin