Name: Daniel Huber, MA
Age: 32
Where do you call home? Vienna, Austria
What is your education? What is a current goal you have with your education? How will FA add to your future? I hold a Bachelor’s degree in Multimedia Art and a Master’s in Visual Communication. Although I am not currently pursuing further formal education, I frequently participate in professional development courses to enhance my skills in my current career. I work as a lecturer at an art university, where I pass on my knowledge in graphic design and art to young students. Additionally, I am self-employed as a visual designer. While FA has made teaching more physically demanding, I plan to transition more towards active design work and public relations while continuing to contribute at the university.
Who do you live with? I live alone, which provides me with the independence I value, but it also presents challenges as I navigate my condition.
What’s a typical day for you? My day usually begins with a quiet moment over coffee. If I’m working from home, I spend my day at home, breaking for lunch and finishing the afternoon with work tasks. Evenings are often spent doing errands or household chores. On days I go to my office, I commute for 1.5 hours by train, making it a full day. By the time I return home in the late afternoon, I’m usually exhausted. In my free time, I make sure to engage in activities that bring me joy, such as wellness treatments, swimming, meeting friends, or taking singing lessons.
How long have you known you are living with FA? When and how were you diagnosed? The first signs of FA appeared when I was around 23 or 24 years old, though at first, they were subtle and gradual. In February 2022, after a year of tests and consultations, my diagnosis was confirmed through a genetic test at the Institute of Human Genetics at the Medical University of Vienna.
Are there any others with FA in your family? No one else in my family has been diagnosed with FA. This, of course, made the discovery more unexpected and difficult to process.
Describe an adaptation and/or transition you have had to take due to living with FA. I am still able to walk and perform most daily tasks, but I can no longer ride a bike or run due to coordination difficulties. I move slower now, and my balance is less stable, especially in the dark, where I often need to hold onto something for support. Adjusting my pace is a challenge, as I often forget that I need to be more cautious. It’s difficult to reconcile the reality of the illness with the way I’ve always lived my life.
What do you like to do to stay active and what type of exercises work for you to stay strong? I try to maintain as much of my previous lifestyle as possible. I attend a four-week rehabilitation program annually, either as an inpatient or outpatient, which provides me with strength and support that lasts throughout the year. Overall, I aim to live without restrictions and continue doing the things I enjoy.
Do you have any hobbies or special interests? Singing is a deep passion of mine. I have completed professional vocal school and even trained as a vocal coach. This decision came partly because I wasn’t fond of traditional speech therapy exercises, yet I still wanted to strengthen and refine my voice. Singing offers me a creative outlet and brings immense joy. Besides that, I have always loved traveling. Although it has become increasingly challenging due to FA, I’m still determined to explore new places and experience new cultures as much as I can. Travel continues to open my mind and feed my curiosity about the world, and I refuse to let FA take that joy from me.
What is a good trick to make daily life easier? Maintaining a positive outlook and using humor to navigate difficult situations has been key for me. Humor lightens heavy moments, and I’ve found that sharing my experiences and openly discussing my illness helps me—and others—cope better. The most important thing for me is not to hide the fact that I have FA, but to speak about it honestly. Embracing this openness has made life easier, and it helps people around me understand my journey.
When FA gets you down, what do you think/do to feel better? When FA gets me down, I find comfort in surrounding myself with friends who make me laugh. Singing is another outlet—I often find it therapeutic to “sing it out.”
What is one way living with FA has POSITIVELY affected your life? Although FA brings significant challenges, it has also profoundly shifted my perspective on life. One of the unexpected gifts FA has given me is the rediscovery of my passion for singing. Before my diagnosis, I may have taken many aspects of life for granted, but now I live much more in the present, appreciating the small and big moments equally. FA has taught me to embrace life without overthinking or delaying things—if I want to sing, I sing. If I want to travel, I make it happen. It has also helped me realize that some worries and stresses are simply not worth the time or energy. This mindset has brought me a sense of peace and focus that I didn’t have before.
What is a favorite motivational quote of yours? “It’s not about the challenges life throws at us, but how we handle them.”
What is a piece of advice that someone with FA has given you that encourages and inspires you? I’ve been told not to fear the wheelchair. While it may seem limiting, it can actually open up new possibilities. I know someone who has traveled the world in a wheelchair, and that’s something they wouldn’t have been able to do otherwise.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Enjoy the present and savor life. Focus on the beauty around you, rather than just the illness. Don’t let FA define you or reduce you to your diagnosis.
What is the first thing you want to do when a cure/treatment for FA is found? If there were a cure for FA and I was healed, the first thing I would do is run—no, sprint—through an open field with the wind on my face, free from any restrictions. I would feel the earth beneath my feet as I jump, dance, and move without hesitation. It’s a dream I hold onto tightly, to feel my body respond effortlessly to my desires, to run without fear of falling, and to celebrate the simple joy of movement.
“I have FA but FA doesn’t have me.” What does this statement mean to you? For me, this statement means that I have the power to choose how I live with FA. While FA affects my body, it has opened my mind to new opportunities. I’ve developed a fresh perspective on the world and discovered new ways to express myself. My lack of control has become a source of movement, and my speech, though halting, has developed a new rhythm. I am not defined by FA, but by how I navigate life with it.
How do you live your life in the face of adversity? Living with FA has taught me how to adapt and thrive, despite the obstacles it presents. While some aspects of life have changed, I refuse to let the challenges define me. My motto is “la dolce vita”—the sweet life—because I believe that life is still beautiful and full of joys to be experienced. I may do certain things differently now, and I may not be able to do everything I used to, but I’ve discovered new ways to find fulfillment. Life is about adapting, making the most of every moment, and embracing happiness wherever I can find it. As Sinatra once sang, “I did it my way.” That’s how I live, on my terms, with resilience, creativity, and an unwavering determination to enjoy every bit of life.
Tell us a little more about you…. I have what’s called a late-onset form of FA, which means I’m still doing relatively well, and I had a carefree childhood and youth. This, however, has made the transition to living with a chronic illness more difficult. I wasn’t used to being sick or having to adjust my life around it. My initial career path was in a very different field—I completed my training as a chef and worked for seven years in the culinary industry. Eventually, I decided to pursue my passion for creativity, and I went back to school to complete my secondary education and then studied art and design. I’ve always had big dreams, especially about traveling and seeing the world. Coming from a small village, I had this ambition to move to a big city, and now I live in Vienna, where I am immersed in the art and culture that I love.
In addition to my professional and personal passions, I believe what could interest readers is how important it is to continue pursuing your dreams, no matter the challenges. I want people to understand that it’s okay to make adjustments along the way, but giving up on what makes you happy should never be an option. I am proof that life can be lived fully, even when the path looks different from what we once imagined. I’m learning every day to embrace change, and it has opened up new, unexpected possibilities for joy.
Are the healthcare providers in your town familiar with FA? Many healthcare providers have told me that they aren’t familiar with FA. Since Skyclarys has been available, I’ve noticed a slight improvement in awareness, but not significantly.
Is there support available from the healthcare system? Yes, I receive full coverage for my medication as well as a four-week rehabilitation program each year. Physiotherapy is also covered by my health insurance.
If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? Austria is a wonderful destination for both culture and nature lovers. I highly recommend exploring our traditional coffeehouses and patisseries, where you can experience the unique charm of Austrian café culture. It’s the perfect blend of cultural richness and natural tranquility.
Do you know anyone else in your country with FA? If so, have you ever met them? Yes, I’m part of a support group where several people with FA participate. We meet regularly and share our experiences.
Did your diagnosis impact your friendships and relationships? If so, in what way? My friendships and relationships have actually become even closer. I’m incredibly fortunate and grateful for the support, acceptance, help, and love I receive from those around me.
What do you wish the general public understood about FA or disabilities? I wish more people were aware of FA or at least knew that such conditions exist. Oftentimes, people misinterpret my symptoms and assume I’m intoxicated or drunk, which can be frustrating.
Has FA had an influence on your course of study or work? If so, in what way? FA has influenced the art I produce and the themes I explore in my creative work. It has also impacted my career path, as I’m gradually shifting from teaching to more active design work, given that teaching has become increasingly challenging.
Are there any modifications that have made it easier for you to pursue your education or work in your job? Yes, I will no longer have to commute as I am transitioning to working fully from my home office, which makes things much easier.
What is your favorite part of your education or work/career? What I love most is being able to stay current with trends and developments in my field. It’s not only a form of personal expression but also a way to remain connected to the pulse of the creative world.
Are you a night owl or an early bird (do you prefer staying up late or waking up early)? I’m definitely a night owl, fitting right into the graphic designer stereotype. But to be honest, I think I relate more to a sloth or a koala—I love sleeping and can be quite lazy at times! I’m always tired, so waking up early is not exactly my strong suit.
Interview by
Jakob Mitterhauser