Changing the Lives of Patients with

Myotubular and Centronuclear Myopathies (CNM)

Meet Lynn

Near Nijmegen, The Netherlands, you’ll find the brilliant and humble Lynn. Like many college students, she enjoys her independence and has many interests including wheelchair basketball, swimming, and her favorite TV shows. She also lives with a rare and severe neuromuscular disorder called CNM. She received this diagnosis as a teenager, and in retrospect, “It was quite obvious that there was a problem.” Always an active child who loved sports, no matter how hard she practiced, her skills and stamina did not improve. She fell a lot, and eventually came to rely on a wheelchair. She also developed digestive and stomach issues and at 17, she received a feeding tube to get her nutrition.

“I invent my own way” – Lynn, living with CNM

As a university student now living on her own, life is exciting. She enjoys her lectures, friends, parties and the endless opportunities. However, some things are different from her fellow students. She relies on a wheelchair and public transportation to get around and it can be hard to keep up with her academics while managing limited energy. She pushes herself to her limits despite these challenges, with the support of her parents and her friends.

She has a passion for mechanical engineering, which is the focus of her studies currently. Eventually, Lynn wants to bring her skills – and her motto — “I invent my own way” to create things that will be helpful to others. Her hopes for the future are therefore to find a job that she is really passionate about and that earns enough money for her to be able to live an unbounded life. In addition, she wishes for a treatment that would make it possible to drive a regular car or eat some of her favorite foods. Even though she is a private person, Lynn has shared her story to raise awareness of CNM and, hopefully, stimulate research.

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