"My body is betraying me": The young women living with rare muscular dystrophy diseases
Meitar had to give up her physics studies, Neta fears the day she will lose her independence and need a wheelchair, and Maya looks at her father and sees the future that might await her too. Three young women with rare muscular dystrophy diseases tell about life alongside the pain, the uncertainty, and the struggle to keep dreaming despite everything. A social worker from Schneider: "Most young people choose not to talk directly about the end of life, but the awareness is present as a background."
They look like any other girl: studying, going out with friends, thinking about the army, their career, and the future. But behind the slow walking, the fatigue, and the pains that accompany every step, Meitar, Neta, and Maya — and hundreds of other young people — are dealing with rare genetic muscular dystrophy diseases that can worsen over the years and gradually change the life they knew. Now, at an age when most of their peers are just starting to run forward, they are already living with the fear of the day when their body will stop cooperating.
Meitar: "I felt as if my body was betraying me"
Meitar, 21, from Beit Efraim, was a child whose whole life revolved around movement. From age 3 she danced ballet, then moved to hip hop, rhythmic gymnastics, tennis, and even surfing. "I loved to move," she says. "I was a completely normal child." But shortly before age 10, her father noticed she was walking on her tiptoes and that one of her calves was swollen. Soon after, she was diagnosed with muscular dystrophy at the Schneider Children's Medical Center.
Despite the diagnosis, for years she almost didn't feel limited. However, the pandemic became a turning point. "Suddenly I noticed how I walk, how I go up stairs. I became slower. At a certain stage I couldn't run anymore — it turned into skipping. I felt as if my body was betraying me. I thought about an action I wanted to do — and the body simply didn't respond." Today, Meitar is trying to rebuild her future, but admits: "What scares me the most is losing the things that today seem taken for granted: getting up from bed, fixing my hair, walking alone. I know that a day will come when I will need to use crutches or a wheelchair."
Neta: "I try not to let the disease define who I am"
Neta, 18, from Kiryat Tivon, grew up with the feeling that she was different. Only at age 12 did she learn she had Bethlem myopathy, a rare genetic muscle disease from the collagen family. "Long walking for me is like running a marathon," she says. "I can't carry shopping, it's hard for me to take plates out of the cupboard, I get tired much faster than people my age."
What scares her most is losing her independence. "I hope I won't reach that, but I know that one day I might need to use a cane or a wheelchair. The thought that I won't be able to take care of myself alone scares me very much." Despite this, Neta finds an outlet in writing: "I write a lot about disability and coping. This is my way to cope. I try not to let the disease define all of who I am."
Maya: "I am the last generation of this disease"
Maya, 18, from Modiin, learned of her diagnosis at 14, when genetic tests confirmed she had MD1 muscular dystrophy, the same condition her father deals with. "They sat us in the living room and said that I am the only one among the sisters who got the disease," she recalls. "It terrified me, because the model I had before my eyes was my father."
Maya looks at her father and sees the challenges he faces: pain, vision problems, and difficulty swallowing. "I don't want to live with the pains I see in my father. I am the last generation of this disease, I am ending it here. I will not pass it on to my children." Despite the fears, Maya plans to enlist in the IDF and speaks about her situation with full openness: "It's part of me, it's part of my life."
Expert view: Adaptation as a continuous process
Noa Albirt, a social worker in the neurology unit at the Schneider Children's Medical Center, notes that dealing with a progressive disease is a continuous process of re-adaptation. "Every change in function, even a small one, requires physical and mental re-adaptation," she explains. "Again and again, the need arises to part with the previous perception of oneself and build a sense of value that doesn't rely only on the body or physical abilities."
Dr. Sharon Aharoni, director of the neurology unit at Schneider, adds that medicine today succeeds in extending life in many cases through medical support and advanced technologies. "The world of muscular dystrophy is in the midst of a research revolution in recent years," she says. "The goal is to enable children and young people to continue to live, learn, and develop — despite the disease."
