My mom told me that the weekend I graduated from law school, she was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease. At the time I didn’t even know what it was.
I quickly learned that ALS is a deadly neurological disorder. The progressive degeneration of motor neurons leads to death while a person’s cognition remains intact. It is estimated that 5,000 Americans are diagnosed with ALS each year. On average, a person dies within 3-5 years after the symptoms first appear.
“This is a disease that gradually robs you of all movement, speech, swallowing and eventually breathing,” said Terry Heiman-Patterson, my mother’s neurologist and also founder of the ALS Hope Foundation, via email.
“ALS is brutal because it will take everything from you and THEN kill you. … It’s like one of those novels that you finish and physically cringe — how could anyone continue to live paralyzed and have trouble speaking and/or breathing? I just can’t imagine. It’s a living nightmare. This is ALS,” said Sandy Morris, 55, via email, an ALS activist currently living with the disease.
After my mother’s diagnosis, I moved back to my parents’ house. I saw my mother slowly lose the ability to speak, swallow and finally breathe. I saw her lose the ability to do everything she loved. We lived in fear of the disease’s rapid progression, but there was nothing we could do to save it.
Although ALS was first identified in 1869, there is still no cure. “There’s no chance of remission, no matter how small, like with cancer. The best thing we can do is slow it down,” Heiman-Patterson said.
My mother died just 17 months after her diagnosis. Because of ALS, she never attended my wedding or met my two daughters.
The feeling of powerlessness at seeing a loved one die without help is incredibly painful. Added to this was society’s general ignorance of the wrath of this disease. I was constantly explaining to my friends what ALS is – detailing how my mother would die.
This ignorance is surprising since anyone can be diagnosed. More than 90 percent of people diagnosed with ALS have no genetic history of the disease. It affects men and women and all races. Adults between the ages of 40 and 60 are most commonly diagnosed, but diagnosis can occur much earlier—even before age 25.
But it doesn’t have to be that way.
Progress is being made in the fight against ALS. The 2014 ALS Ice Bucket Challenge raised $220 million worldwide and led to the identification of a gene that commonly contributes to ALS.
“We have more hope now because we’ve identified more than 40 genes that may increase risk of ALS, and those genes have led to new treatment avenues being identified,” Heiman-Patterson said. There are also more studies than ever, work is underway to improve early detection, and “one more approved drug and one new drug await potential FDA approval.”
Despite these hopeful advances, there is still no cure. And we can’t stop until there’s a treatment that will save lives. Among other things, we need to raise awareness, raise money, invest in treatments, and help people with ALS get earlier access to available medicines.
It is now 12 years since my mother died of ALS. Each day for ALS Awareness Month in May, I shared one person’s ALS story on social media. Even for someone who has witnessed the course of the disease, the stories can be difficult to read. But we can’t look away.
“There’s also ALS apathy. That won’t happen to me. It’s rare. It’s such a terrifying thought too. It’s best to look away. Lock it out,” said Morris, ALS activist.
Every 90 minutes a new person is diagnosed with ALS and someone dies from it, according to the ALS Association. For my mother, for those living with the disease, for those who have already died, and for her family, friends, and communities, please don’t look the other way. Please take care of ALS.
Katie C. Reilly is a freelance writer and attorney. Her writing focuses primarily on women’s health, mental health and parenting and has appeared in The Washington Post, The Magazine of the New York Times and parents magazineamong other publications.
The views expressed in this article are the author’s own.
https://www.newsweek.com/why-you-should-care-about-als-opinion-1710647 Why you should care about ALS