Lisa Hultermans 1 Name: Lisa Hultermans

Age: 20 years old

Where do you call home? I live in the Netherlands in the town of Tilburg.

Education (degree(s): I finished my studies in 2021 with a degree in helping care and welfare, unfortunately I could not work in this, because it became physically too heavy work.

Who do you live with? I still live at home with my parents and my brother of 25.

What's a typical day for you? At the moment, I'm very busy with sports, I'm at least 5/6 days a week busy with sports and further I keep the house at home with my mother.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old, after a year of testing without result I had an epidural where they took out a certain fluid and it turned out that I have FA.

Are there any others with FA in your family? I am the only one who has been diagnosed with it, no one in the family has any symptoms of FA.
Describe your transition from walking to walker/wheelchair. When I was just diagnosed with FA, I deteriorated rapidly in a very short time, I kept walking as long and as much as possible but after a year I got more and more pain in my knees while walking and my balance got worse and worse, I am now in the wheelchair for about one and a half year although I still walk as much as possible.

What do you like to do to stay active and what type of exercises work for you to stay strong? I have always been very sportive, also for FA, I used to do kickboxing which gave me a lot of satisfaction, I still like sports as much as before and therefore sports are a big part of my life. At the moment, I do handbiking and fitness. In June, I will also participate in the HandbikeBattle 2022 so that is a new challenge for me!

Do you have any hobbies or special interests? I really enjoy being with friends/family and doing fun things like going to amusement parks or weekends away.

What is a good trick to make daily life easier? For me, it helps a lot to get out of bed at 7:30 every morning on weekdays, for me this is quite early and also to have a good breakfast, this way I have a lot of energy for the rest of the day.

When FA gets you down, what do you think/do to feel better? Living with FA, I find sometimes still very difficult, everyone have good and bad days, on the bad days when everything goes less around FA I try to go away to a place where I can relax and for me that is going to a beautiful lake near nature with my father, there I can think but also relax.

What is one way living with FA has POSITIVELY affected your life? FA has positively influenced my perseverance and willpower, it has made me mentally very strong and even though living with a disability is not always simple or easy, I always think and say "I can do everything that someone else can do, I just do it in an adapted way".

Lisa Hultermans 2 What is a favorite motivational quote of yours? "I can do anything anyone else can do, I just do it in an adapted way" this really helps me a lot to go after your goals, but also to give you a push in your back.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? haven't been diagnosed with it for that long so it's hard for me to give anyone advice, but I would definitely tell someone that you shouldn't keep anything inside, talk about it if something is bothering you, whether it's to a friend, a family member or a psychologist it doesn't matter as long as you open up your heart and feel comfortable with that person. I also think it is good advice to keep the people you love close to you, they will help you get through it.

What is piece of advice that someone with FA has given you that encourages and inspires you? That you have to accept this at your own pace or learn to live with it and when you have succeeded, you can / should look further for goals you want to achieve or things you like to do.

What is the first thing you want to do when a cure/treatment to FA is found? Then I'll go after it right away, and if there is a treatment or even the possibility of getting better then the first thing I would do would be to run, I miss that a lot.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I have FA, but FA doesn't have me that statement means to me that I will always do everything I can to stay as stable as possible as far as it goes, and that I may never fully accept FA, I am learning to live with it/handle it.

Tell us a little more about you… I am a positive person, when I was just diagnosed I was very depressed especially mentally, when my rehab started they helped me a lot to be positive although it is not always possible, but whatever you can do to get out of depression again. Until one and a half year ago I didn't want to know anything about a wheelchair, until I realized how much positive it brought me, how much I benefit from it. Now I use the wheelchair without any effort and I go handbiking, sport is an important point in my life and I really want to see how far I can get with handbiking.

Interviewed by
Interviewed by Xhesika Peza