Little by little, 22-year-old Lisa Hultermans from Tilburg has to give up something of her body. She has the rare muscular disease Friedreich Ataxia, which makes her movement increasingly difficult. It started with difficulty walking and shaking hands and eventually the disease affected all her muscles. But until then, Lisa wants to get the most out of life. And that is why she is cycling up an eight hundred meter high mountain in Austria this summer using arm strength.
Lisa was diagnosed with the disease at the age of 17, when her father noticed that she was not walking completely straight. She underwent all kinds of examinations for a year. It remained unclear for a long time what was going on, until the doctor tested her cerebrospinal fluid. “It turned out that I had Friedreich Ataxia, something I had carried with me since birth.”
The disease is hereditary, but Lisa’s parents are not sick themselves. “Every cell in your body has two branches,” Lisa explains. “My father and mother both have an ‘infected’ twig. This makes them carriers, but they do not have the disease themselves. When I was born I was given two twigs, which is why I am now ill.”
“When the doctors told me that, it really hit me.”
While girls of Lisa’s age are busy going out, shopping and going to terraces, Lisa often sits at home with her parents. Her sense of balance has almost disappeared and her hands are starting to shake more and more. Sometimes she drops her phone from her hands. Doing her own make-up, something she loves to do, is also becoming increasingly difficult. “It’s little things that happen and they accumulate,” says Lisa sadly. “Every month it is getting worse and worse and that is quite scary to realise.”
Only 100,000 people worldwide have the muscle disease that Lisa has. And in the Netherlands there are only a few hundred cases. “Most people with the disease do not live longer than thirty or forty years,” says Lisa. “When the doctors told me that, it really hit me.”
“I want to show that with the right attitude you can go very far.”
Lisa therefore wants to get the most out of life, while she still can. “When I die, I want to be able to say that I did everything I could to live.” In June she will go to Austria, where she will participate in the Handbike Battle. There she will cycle up an eight hundred meter high mountain.
“That’s twenty kilometers up on pure arm strength,” says Lisa. “I like challenges and I want to show that no matter what situation you are in, with the right attitude you can go very far.” Last year she also participated in the competition and told her story in a podcast. Lisa hopes that more attention will be paid to this rare muscle disease.
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