Last week, we talked about the ALS Ice Bucket Challenge. At the time, the viral campaign had raised $30 million for the ALS Association. Now, that number is close to $80 million — and it keeps rising.
Besides raising money, the challenge was designed to raise awareness. Even critics of the challenge have to admit, it’s living up to that expectation as the disease enjoys time in the spotlight it rarely gets.
The Washington Post published a list of five myths about the disease, including the myths that ALS only affects motor activity and that it’s a disease of “old people.”
Here are some facts about ALS from the ALS Association:
- ALS is not contagious.
- It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
- Approximately 5,600 people in the U.S. are diagnosed with ALS each year.
- The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
- Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.
- More than half of all patients live more than three years after diagnosis.
- About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years.
- There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
- ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
- ALS can strike anyone.
- The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
If you want to learn more about what it’s like living with this disease, MPR News has a series that tells the powerful story of one man’s experience of ALS.
Bruce Kramer was dean of the School of Education at the University of St. Thomas in Minnesota. He was diagnosed with ALS in 2010. Since then, he has shared his journey with the incurable disease from time to time with MPR Morning Edition host Cathy Wurzer. Listen to their conversations here.