Why You Should Care About ALS | Opinion

My mother told me she was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS, or Lou Gehrig's disease, the weekend that I graduated from law school. At the time I didn't even know what it was.

I quickly learned that ALS is a fatal, 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 annually. On average a person dies within 3-5 years after symptoms first appear.

"This is a disease that progressively robs you of all movement, speech, swallowing and finally breathing," said Terry Heiman-Patterson via email, who was my mother's neurologist and is also the founder of the ALS Hope Foundation.

"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 shudder—how could someone continue to live paralyzed, struggling to speak and/or breathe? I just can't imagine. It's a living nightmare. That is ALS," said Sandy Morris, 55, via email, an ALS activist currently living with the disease.

After my mother's diagnosis, I moved back into my parents' house. I witnessed my mother slowly lose the ability to speak, swallow and eventually breathe. I watched her lose the ability to do everything she loved. We lived in fear of the disease's progression, which was rapid, but there was nothing that we could do to save her.

Even though ALS was first identified in 1869, there is still no cure. "There is no chance of remission no matter how small, like cancer. The best we can do is slow it down," said Heiman-Patterson.

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 impotence from watching a loved one die with no ability to help is indescribably painful. And it was compounded by society's general ignorance of the wrath of this disease. I constantly explained to friends what ALS was—describing in detail how my mother was going to die.

LA County walk to defeat ALS
The 18th annual LA County walk to defeat ALS at Exposition Park on November 3, 2019, in Los Angeles, Calif. Presley Ann/Getty Images

This ignorance is surprising since anyone can be diagnosed. More than 90 percent of individuals diagnosed with ALS have no genetic history of the disease. It affects men and women and all races. Adults between the ages of 40-60 years old 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 have identified more than 40 genes that can increase the risk of ALS and these genes have led to identifying new pathways to target for treatment," said Heiman-Patterson. There are also more trials than ever before, work being carried out to improve early diagnosis and "one additional medication approved and another new medicine awaiting possible approval at the FDA."

Despite this hopeful progress, there is still no cure. And we can't stop until there is a treatment that will save lives. We need to increase awareness, raise money, invest in treatments and help those living with ALS get access to available medications sooner, among other initiatives.

It has now been 12 years since my mother died of ALS. For ALS Awareness Month this May, I have shared one person's ALS story every day on social media. Even for someone who witnessed the course of the disease, the stories can be hard to read. But we can't look away.

"There is also ALS apathy. It won't happen to me. It's rare. It's also such a terrifying thought. It's best to look away. Lock it out," said Morris, ALS activist.

Every 90 minutes a new individual gets 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 their family, friends and communities, please don't look away. Please care about ALS.

Katie C. Reilly is a freelance writer and attorney. Her writing primarily focuses on women's health, mental health and parenting and has appeared in The Washington Post, The New York Times Magazine and Parents Magazine, among other publications.

The views expressed in this article are the writer's own.