Leah Stavenhagen on creating Her ALS Story

No matter what you’re going through, life is so much easier when you know you’re not alone.

This concept ranges from simple daily chores at work to traveling the world with a significant other. But that’s especially true when it comes to coping with health issues — something Leah Stavenhagen had to learn the hard way.

Stavenhagen learned she had ALS when she was 26. Amyotrophic lateral sclerosis is not something she had heard of before that terrible day. Naturally, like most of us, she immediately Googled the disease to find out more, realizing that almost all of the references were to men battling it.

“You see Lou Gehrig and Stephen Hawking – people you can’t really identify with,” Stavenhagen said.

According to ALS.org, the disease is 20% more common in men than women, and most people who develop ALS are between the ages of 40 and 70 (median age of 55 at diagnosis). But Stavenhagen somehow ended up with the disease despite not fitting the two most likely criteria.

“It was never within the realm of possibility,” Stavenhagen said. “You never imagine you’ll be in this position. Like I said, it’s super isolating to look outside and think, ‘Wait, so I have this weird, weird thing that’s going to totally turn my life upside down? And besides, no one else like me has this? How is it possible?'”

The most notable names who died from ALS are Gehrig (whose disease was informally named) and author Hawking. The first link that appears on a Google search for famous people with ALS lists seven names – all men. Stavenhagen wondered how she was going to find ways to cope when he felt so bad about having a terminal illness and no one like her online to relate to.

That’s when his idea for Her ALS Story was born.

Stavenhagen had time to digest her diagnosis before determining that she was ready to go more public to find others like her who felt so isolated. With the help of the I Am ALS group, she was able to create her own organization dedicated to women who were diagnosed with Lou Gehrig’s disease at age 35 or younger.

The group’s goals are simple: to challenge the stereotype that ALS is a disease of older white men, to cultivate relationships with women legislators to improve current health and insurance standards, to introduce legislation to expedite the drug pipeline, communicate with each other to help each other through this journey, and most importantly, raise funds for ALS research to one day end this horrible disease.

The group started with maybe 10 people in April 2021, but after a few successful events it has already grown to over 40 young women in just over a year. They fundraise for retreats to meet in person and get a massage or do group activities to escape the reality of their situation. They work together to create new ideas and events and seek to share as many young women’s stories as possible.

“I think our voices are maybe louder than others because others don’t expect young people to deal with these things,” Stavenhagen said. “We were all just getting married, forming relationships, starting careers, always thinking about starting a family.

“When you’re in your 20s or 30s, you don’t have to think about the fact that we’re all only on this planet for a limited time, and the women in this group have faced this very harsh reality a lot. too young.

As time goes by, there aren’t many people left in this world who still remember hearing Gehrig’s famous “Luckiest Man” speech on July 4, 1939, when he confirmed he had been diagnosed with this terminal illness. Yet nearly a century later, there has been very little progress in understanding how ALS forms (given that only 10% of cases are genetic) and how to properly treat it.

“Everyone is going to know someone or have a relationship that is affected by this disease,” Stavenhagen said. “It doesn’t discriminate, which means everyone should pay attention to it.”

The limited information known about ALS makes it even more difficult to raise awareness among all affected groups. But that’s what Stavenhagen is determined to help solve.

“I think that’s why it’s so cool that we ended up with Her ALS Story,” Stavenhagen said. “We are a group of young women who say this horrible thing affects us too. … We are all fierce, independent young women. Only some of us have seen our independence stripped away a bit.

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