Published: July 09, 2008 04:15 pm            

Letters to the editor July 9, 2008

Dear Editor,

Hi, my name is Sherry Owens, and I have ALS, better known as Lou Gerhig’s disease. My husband Cal and I have been in business here in Sulphur for over 20 years. We have two sons. Our oldest is married and in the Navy. Our youngest is in law enforcement. I love sports, I have always worked, I have a strong faith in God and I have had a wonderful life.

Since 2003 I have been dealing with problems that have led to the diagnosis of ALS. I can no longer work, I can no longer walk, and I know my family and I are faced with some life changing questions.

However, I have not written this for you to feel sorry for me or pity me. I am not that kind of person. I write to reach people today about a disease a lot of people know nothing about.

Frankly most people do not want to talk about it because it can be such a devastating, ugly disease. ALS is a progressive degenerative disease that affects nerve cells in the brain and spinal cord. The cause of ALS is not understood, there is no cure and there is only one treatment that may help slow the progression. ALS is a disabling disease that can affect speaking, walking, eating, swallowing, and breathing due to loss of muscles. Most people with ALS will die within five years due to respiratory failure. Research is being done through grants and funding hoping to find a new effective treatment, or hopefully even a cure someday.

In the fall of 2007 a bill (s1382) was presented by Sen. Harry Reid to develop a system that could collect information in order to establish a National Registry for ALS. The purpose of the registry would have been to better describe the incidence and prevalence of ALS, examine the appropriate factors, such as environmental and occupational reasons for the disease, and also to include demographic factors such as race, age, gender, and family history. A similar bill passed the house 441 yes votes, 4 nays and 17 not voting. It has 76 co-sponsors in the Senate. Senator Tom Coburn, a medical doctor from Oklahoma, has single-handedly locked this bill. This hold tactic is a callous, selfish act that will personally affect me and thousands of ALS patients who will eventually become paralyzed and die of suffocation from this horrible disease.

Please join me in protest of Senator Coburn. Email (Stephanie_Carlton@coburn.senate.gov) or call his office at 202-224-5754. Let him know this hold must be lifted. Something has to be done. Research is being done, but without the data to support the studies, a cure may never be found. The number of people with ALS is only a guess. Many are misdiagnosed or never diagnosed due to a quick death. ALS is very hard to diagnose, but with registry we might be able to find common factors, and eventually a link to so many unanswered questions about this disabling disease. As a medical Doctor you would think Senator Coburn would be more compassionate for those of us and our families who are suffering from this destructive disease.

Thank You

Sherry Owens, Sulphur

        

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