Primary Lateral Sclerosis Awareness Month
Mr. Speaker, I rise in support of H. Res. 896, the Primary Lateral Sclerosis Awareness Month Act. I would like to thank Chairman Dingell, Chairman Pallone, Ranking Member Nathan Deal, along with Mr. Terry, for helping guide this…
Mr. Speaker, I rise in support of H. Res. 896, the Primary Lateral Sclerosis Awareness Month Act. I would like to thank Chairman Dingell, Chairman Pallone, Ranking Member Nathan Deal, along with Mr. Terry, for helping guide this legislation through the committee.
Primary lateral sclerosis, commonly referred to as PLS, is a neurological disorder that affects the cells that control the voluntary muscles. PLS is similar to ALS, often called Lou Gehrig's disease.
Can you imagine someone who is diagnosed with PLS, but yet they are told that it is ALS and in fact it was PLS that they were diagnosed, and thinking that they only had X amount of time to live, its impact it has on the family members and others as they begin to look at that disease because not enough research has been done? That is devastating to the individuals and the family members who are diagnosed. That is why it is important that we do the research.
This illness is, of course, named after the famous Yankee baseball player who suffered and died of ALS before we knew much about it. As with many other neurological disorders, once the nerve cells that control the voluntary muscles are affected, a person's physical ability to function becomes very difficult.
Symptoms of PLS include difficulties with balance, sudden involuntary muscle spasms in the hands, feet, legs, and speech problems when the facial muscles are affected. But these symptoms are not unique to PLS alone. PLS is often very difficult to diagnose because the symptoms vary, and may progress slowly over a period of time of many years. I would rather have someone be diagnosed with the right PLS versus ALS to know that they are going to live a lot longer.
Because of this, many Americans are still unaware of the severe nature of PLS, even though the disorder was first discovered in 1850 in France. That is why we need to continue with greater and more expansive research.
My resolution serves to raise awareness across the Nation by urging all Americans to recognize February of 2009 as PLS Awareness Month. This resolution emphasizes the need of greater funding and more research to combat neuromuscular disease. With this bill, Congress is helping educate our doctors and nurses and the rest of the medical community about PLS.
However, there are many courageous and dedicated individuals who are doing this already.
One is my good friend, Hardy Brown, who is from my district and, of course, owner of the Black Voice Newspaper in California. He has dedicated his life to serve as a voice for underrepresented communities in the Inland Empire. Throughout his life, Hardy Brown has done a tremendous job in the community raising awareness of Lou Gehrig's disease. Now he is diagnosed with PLS. Hardy Brown, once a vibrant, active leader, is now in a wheelchair doing what he can despite difficulties moving, speaking, and typing.
Another individual, Tyonja Bathgate from Maryland, whose husband was diagnosed with PLS, has torn herself from her husband's bedside to advocate on behalf of this issue.
We want to thank these individuals and all others who have worked to raise the awareness of these conditions. But we must do more, and urging the establishment of a PLS Awareness Month is a step in the right direction. There is currently no cure for PLS, and hopefully one day we will find a cure. God willing, we will do that.
Treatment and symptoms vary from person to person, and the age of onset is generally between the ages of 35 to 66, and, as it was stated, over 2,000 have been diagnosed with this.
Because of the similar symptoms, researchers believe that PLS patients are often diagnosed with ALS, and I have already stated the effects it has on families when they are told that.
Most of us have heard of Lou Gehrig's disease, but this legislation today will help raise the awareness and stress the importance of a very familiar disorder. The medical community must be able to properly diagnose those individuals who suffer from PLS and other neuromuscular disease to ensure proper care and treatment.
I urge my colleagues to vote for H. Res. 896, and join me and all individuals and organizations in this effort to fight this devastating illness. And I want to thank again Mr. Pallone, Mr. Terry for helping us with this legislation and many of the others that will support this to make sure that not many other individuals suffer from this type of disease that will affect others as well.