ALS (Lou Gehrig’s disease) is serious—research is key to understanding the disease, offering hope for future Editorial Note: The people in this blog are based upon the stories of real people who have ALS
Angela’s shoelaces just wouldn’t tie right. Her husband Shawn had teased her that it must be stress. After all, Angela had just started her retirement, and there was just so much to do: manage her volunteer work, help the children finish college, and plan the next chapter of her life.
But when Angela’s left leg started getting weak, she and Shawn finally went to a doctor, who referred them to a neurologist. The news was bad: Angela had amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease— attacks the nerve cells that control voluntary movement. No one knows for sure what causes ALS, and there is no known cure.
After seeing a neurologist, Angela and Shawn did some research to try and understand this disease. They learned that ALS affects nerve cells in the brain and the spinal cord that send messages throughout the body. When these nerves start to die, the brain can’t control muscle movement. Over time, patients can become increasingly weak and even paralyzed.
Unfortunately, ALS is nearly always fatal.
“Of course we were completely overwhelmed at first,” says Angela. “Shawn was my rock, but I’m worried about
him too—I depend on him more and more.”
“We want to do everything we can to help ourselves now—and we want to help researchers understand more about this disease so that future generations won’t have to worry about it. That’s why we wanted to join the National ALS Registry.”
The National ALS Registry helps gather information from people like Angela who are living with this terrible disease. Researchers from all around the world can access the Registry data to help scientists learn more about what causes this disease.
During the seven years of the National ALS Registry’s existence, researchers have learned a lot about ALS. But there is still a long way to go to understanding this disease. The Registry relies upon the participation of the people around the U.S. living with ALS. The Registry has found that almost 16,000 persons with ALS live in the United States as of 2014. In addition, the Registry is funding research to find out what may cause ALS such as exposures to environmental toxins and pollution, genetic links, and medical conditions or medications that may reduce or increase the risk of getting ALS.
While we don’t know the causes of this disease, we do know that African Americans are not as well represented in the Registry as they could be. To get a full picture of this disease—and understand its possible causes, and potential treatments—the Registry needs many patients of all races and ethnicities to register. All of the data are confidential; researchers do not get patients’ names or addresses.
Every year, nearly 5,000 more people are diagnosed with this terrible disease. Everyone’s story is different, and everyone’s piece of the puzzle is essential. It is important to include as many people living with the disease as possible to get the most accurate information. When patients join, it helps give researchers more information. This could lead to a better understanding of the causes of ALS, and could help offer a better future for people with ALS in all communities.
If you or someone you care about has ALS, please consider learning more about the ALS Registry by visiting www.cdc.gov/ALS.
Dr. Paul Mehta, Agency for Toxic Substances and Disease Registry (ATSDR/CDC)
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