The young women grappling with an ‘old man’s disease’

By Roni Caryn Rabin

The New York Times

The most stressful part of the trip for Sunny Brous came when she had to part with her wheelchair so the flight crew could put it in the luggage hold. You just never know what shape it will be in when you get it back, she said.

“I tell them, ‘Take the best care of it you can,’ ” she said. “Those wheels are my legs! Those wheels are my life.”

Brous, 38, who lives in Hico, Texas, was one of dozens of women who converged on the Sea Crest Beach Resort on Cape Cod in Massachusetts toward the end of summer for the gathering of a club no one really wanted to be a member of: women diagnosed in their 20s and early 30s with amyotrophic lateral sclerosis, or ALS.

The terminal neurodegenerative disorder robs them of the ability to talk, walk, use their hands or even breathe. It has long been seen as a disease of older men, who make up a majority of patients. There is no cure.

The women traveled with husbands, mothers, sisters and aides, and they did not travel light. Their packing lists included heavy BiPAP machines to help them breathe, formula for their feeding tubes, commodes, portable bidets, myriad chargers, leg braces and canes, pills and pill crushers and bottles of a medication with gold nanoparticles that was still being tested in clinical trials.

Half of Brous’ suitcase was filled with party gifts for the friends she texts with throughout the year on an endless WhatsApp chat, including bags of popcorn with Texan flavors like Locked and Loaded, a cheddar, bacon, sour cream and chives combo that you can only get in Hico.

Desiree Galvez Kessler’s sister drove her, her mother and an aide up from Long Island, N.Y., in a van with a clunky Hoyer transfer lift in the back. Kessler — Desi to her friends — was diagnosed at 29, and has not been able to walk or speak for 10 years; the large computer tablet she communicates with using eye-gaze technology is mounted on her wheelchair.

Kessler, 40, was also toting two magnum bottles of Casamigos Reposado tequila. She was planning to party.

Frida Hansson, 40, traveled the farthest, all the way from a small town in Sweden, near Malmo. She can still walk, but not easily, and she had called the airports in advance to find out how far away the gates were and if there were steps to the plane.

The five-day retreat for members of Her ALS Story, a community of women diagnosed in their 20s and early 30s, offered an opportunity to be with others in the same treacherous boat. When schnapps was offered, people asked, “Do you want to take it orally or not?” No one noticed if you ate slowly or if you had to be fed.

It was a chance to feel almost normal.

“They get me,” Hansson said of the others in the group.

She likes the rapport among the women. A similar group she connected with in Sweden had been laser-focused on finding a cure for ALS, to the point where “I think they’ve stopped enjoying the life they have now,” she said.

“The attitude here,” Hansson said, “is, ‘Screw this, where’s my drink?’ ”

Many of the women had tried traditional ALS support groups but found little in common with others on the Zoom calls, most of whom were older men. The programs there centered on how to share the news with grandchildren or whether they needed to retire early.

“I was concerned with trying to find shoes that could work with my foot braces and still be stylish, and navigating my way around the city avoiding stairs,” said Leah Stavenhagen, 32, whose frustration led her to start the women’s group in 2021, two years after her diagnosis.

Stavenhagen wanted to talk with other women about how to manage her hair and makeup when she could not do it herself. How to manage her periods when her fingers were too weak to manipulate tampons. Whether she could do something to stop menstruation altogether, since she was also coming to terms with the devastating realization that she would not have children. And, of course, there was the matter of sex.

“ALS is such an isolating disease, constantly stripping away pieces of you that make you you,” Brous said. “You’re always having to ask someone else to be your arms and legs and your driver, and it’s easier to say, ‘It’s easier if I stay home.’ But that isolation will eat you alive.

“With a group like this where ALS is neutralized, you can just be your most authentic self,” she said. “That’s everything. It’s the cherry on the top of this horrible disease.”

‘Look at my hands being stupid’

Brous’ first symptom was a tremor in her left ring finger. She was 27 at the time, and it wasn’t painful, so she did not think much about it. She called it her “party trick.”

Jessica Northrop, 39, a massage therapist in Anaheim, started dropping the lotion bottle she used with clients and had trouble holding the hot stones. She occasionally had uncontrollable fits of laughing or crying, one of the effects of the disease.

“I thought I was losing my mind,” she said. She was 29 at the time, and just about to move out of her parents’ home and get her own apartment.

Kelly McGinn, 41, couldn’t get her thumb to clutch a cup or a can. That was two or three years ago. She thought to herself, “Look at my hands being stupid.”

Stavenhagen’s toes dragged when she walked, but she was 26 then, living in Paris with her college boyfriend, and her whole life seemed to be “coming together.” So she put off going to the doctor. “I thought there was just something wrong with my foot,” she said.

Other women said they started tripping and falling. They told themselves they had always been clumsy. Some started slurring their words and having trouble talking; they sounded like a record played on the wrong speed.

One thought the weakness in her hands was carpal tunnel syndrome. Maybe surgery would fix it.

“I thought I just had a pinched nerve,” McGinn said.

It took over a year for most of them to learn they had ALS, commonly known as Lou Gehrig’s disease, named after the New York Yankees baseball player who was diagnosed at 36.

The disease has always skewed toward men and older individuals. The average age of diagnosis is 55, according to the ALS Association. There’s no evidence those trends have changed significantly or that more young women are developing it.

“It’s relatively rare for young women to develop ALS, but unfortunately it’s not impossible — it can strike at any age,” said Dr. Sabrina Paganoni, a neurologist at Mass General Brigham whose research focuses on new therapies for ALS.

But it is not the first thing that comes to a doctor’s mind. Most physicians have never seen ALS in a young woman and do not want to find it; the average life expectancy is five years.

There is no definitive test or biomarker, so the diagnostic process can be protracted. Other conditions generally must be ruled out first.

By the time Northrop went to the doctor, she was losing her ability to speak. The doctor told her that she was fine and that she was suffering from depression. She was puzzled. “About what?” she said.

Kessler was pregnant when she first felt weakness in her right hand, but her obstetrician was dismissive. She was diagnosed shortly after she gave birth, at 29, when she started having trouble buttoning up her baby’s onesies.

When the women began having symptoms, their parents often hoped it would turn out to be something different — Lyme disease, even multiple sclerosis.

A family acquaintance who was a physician told Stavenhagen there had to be a mistake.

“You’re a young woman,” she recalled the doctor saying. “There’s no way you have ALS.”

The women often use dark humor as a buffer against the horrors of the disease.

In the spring, Brous said she asked on the chat group if anyone was giving up something for Lent. The women didn’t miss a beat.

“The answers were, ‘Yeah, the use of my arms!’” Brous said. “‘Feeding myself.’ ‘Walking.’ ‘Talking.’

“We try to celebrate small things, like that it’s been a week since I peed in my pants,” she said. “That’s a big thing in our world.”

Jokes grant them an element of control over the disease. “If you approach it with a little humor, you own it more, instead of it owning you,” Hansson said.

‘I want to be strong for her’

The annual gatherings also bring together the caregivers: the husbands and mothers and sisters and cousins who help feed, dress, change and clean the women with ALS. Who interpret for them when they can no longer speak.

Several of the mothers have biweekly chats between the annual gatherings to help one another troubleshoot, said Susan Stavenhagen, Leah Stavenhagen’s mother.

Does anyone have recommendations for drugs for the insomnia that comes with ALS? The anxiety? How do we handle the uncontrollable fits of laughter and crying?

“Your child looks to you for answers,” Susan Stavenhagen said. “Sometimes you can’t provide it.”

Even after you get something figured out, it changes, she said. That is the nature of the disease. It keeps progressing.

The mothers try to shield their daughters from their own pain.

“I’m the mom. I want to be strong for her. I’m supposed to be the support,” Stavenhagen said. “If she doesn’t want to be sad, which I know she doesn’t, I want to meet her where she is.”

Over the course of five days at the resort, perched on Buzzards Bay, the women did things they haven’t been able to do in quite a while. A local organization provided floating beach wheelchairs, and Brianna Salgado, 30, who lives in Miami, was able to get in the ocean for the first time in five years. (Asked how it felt, she said, “Cold!”)

Hair stylists and makeup artists came in one afternoon to get the women glammed up for a dinner and drag show dedicated to Elena Coccio, a young Rhode Island woman whose disease moved swiftly, killing her within a year of diagnosis. She was 27 and obsessed with drag shows, her mother, Liz Coccio said.

The makeup artists managed to cover up a huge shiner McGinn was sporting after a bad fall. Hansson got a tattoo of an ampersand, which has become an important symbol for the women.

“The meaning is that you can have two thoughts at the same time and two identities at the same time,” she said. “You can have this illness and at the same time also want to take a shot of tequila.”