What is your name? Tiffany Nash Fransen
How old are you? 27
Where do you call home? My family and I just moved to Highland, Utah, but I grew up in Scottsdale, Arizona.
Who do you live with? I live with my husband, Alex, and our two little boys: Robbie (3 years old) and Andy (15 months old). We also have an English Bulldog named Dudley.
How long has it been since you experienced the first symptoms of FA? What is the situation now? I’ve never been athletic, and I was always very clumsy. In fact, my senior superlative in high school was ‘Most Likely to Trip at Graduation.’ When I was about 21 years old, I started having trouble going down stairs and noticed I was tripping more often. About a year later, I was diagnosed with FA. I now use a walker full-time—unless I’m feeling brave enough to walk on my own at home. When I travel or need to cover longer distances, I use a wheelchair or scooter.
Are there any others with FA in your family? My younger sister also has FA. She was tested after my diagnosis because my family noticed similar signs and symptoms in her. My other sister is a carrier, and I have two brothers who do not carry the FA gene.
How has FA affected your friendships and relationships? Were people supportive? Everyone I know has been incredibly supportive and always willing to lend a hand. It can be difficult at times because I’m not able to participate in many of the activities my friends enjoy, but most people go out of their way to make things accessible so I can be included. Still, I have to remind myself that it’s okay for the people around me to do the things they love, even if I can’t always join them—and that’s okay!
What do you like to do to stay active, and what type of exercises work for you to stay strong? I work out with a trainer four times a week! We focus on strength, coordination, balance, and stamina—all at my own pace. Some days I can do more, and some days less, depending on how I’m feeling. My trainer does a great job of creating exercises that are FA-friendly and tailored to my needs.
What is a favorite motivational quote of yours? I don’t have a specific quote that I live by, but there’s a question I think about often: ‘Why me?’ Let me explain. When I was first diagnosed, I asked myself that all the time—’Why is this happening to me? I don’t deserve this. Why me?’ I still don’t believe that anyone deserves to have FA. But now, I ask that same question with a different intention. I say to myself, ‘Why me? I have this rare, progressive disease—so what am I going to do about it?’ I believe my life has a greater purpose, and by asking that question and acting with intention, I know I’ll find it.
What is a piece of advice that someone with FA has given you that encourages and inspires you? I don’t know if she knows this, but I was reading one of Madelyn Raynsford’s blog posts, and she said something that really stuck with me: ‘I have FA, but FA does not have me. God does.’ Even if you’re not religious, I think the sentiment is still powerful. FA is a part of me, but I am not a part of it. It doesn’t have to consume me. Not so much advice, but encouraging nonetheless.
What is the best advice you could give to a person who has been newly diagnosed with FA? Someone newly diagnosed is probably terrified, and you think it the end of the world (at least that’s how I felt). And those are all completely valid feelings. But I would tell them, its not the end, it’s the beginning. The beginning of something hard, and scary, but still just as beautiful and happy as you were expecting. Different doesn’t mean bad, it just means different. And the best way to be happy during this hard and scary time is to choose to see the good and happy things. If you’re not actively choosing the good and happy, the bad and scary will overshadow everything.
What role has your family played in your journey with FA? My family has played a pivotal role in my journey with FA. My parents have supported me physically, emotionally, and financially when needed. My husband handles everything I can’t manage with our kids—dirty diapers, nighttime routines, walking with crying babies in the middle of the night—you name it, he does it. My extended family is also a huge help, whether it’s watching the kids or simply accompanying me to the grocery store. I literally couldn’t live the life I do without them
How do you handle days when you’re feeling low or discouraged? Honestly, I let myself be sad. Sometimes a good cry is exactly what I need. I’ll grab some comfort food, watch a sad movie, and allow myself to feel sorry for a little while. But eventually, I’m always able to pick myself back up and choose happiness again. Having kids helps with that. Sometimes I have to bounce back whether I want to or not, and they always seem to find a way to make me laugh.
Have you found any support groups or communities helpful? The FA community is truly the best. Connecting with people who know exactly what you’re going through has been one of the most helpful parts of my journey. The virtual hangouts organized by FARA Ambassadors are always a blast and a great way to feel supported and understood.
What are your current goals or aspirations for the future? My goals mainly revolve around my kids. Recently, my husband and I purchased our first home, and we’re working on making it fully accessible for when I may need it in the future. Above all, my main goal is to ensure that my family is happy and healthy.
How do you track or monitor your health, and are there specific tools or technologies that you find helpful? I don’t use a lot of technology to track my health, but I do wear an Apple Watch in case I fall when no one is around and I don’t have my phone with me. It gives me peace of mind knowing I can always call for help if I need it.
What hobbies or activities bring you joy and relaxation? I love binge-watching a good TV show or getting lost in a book. I’m a people person, so spending time with friends and family, whether we’re playing games or just talking, is one of my favorite things to do.
How has FA influenced your career or educational path? I was diagnosed with FA about halfway through my college experience, after I had already chosen my major, accounting. Fortunately, I was still able to pursue a career in this field despite my disability. I currently work for a startup company, handling invoicing and collections. The company is owned by my dad, which allows me a great deal of flexibility, something I’m truly grateful for. The primary purpose of my career is to support my family in any way I can.
Are there any books, podcasts, or resources that you would recommend to others with FA? I don’t listen to any FA-related podcasts, but if you’re looking for a good laugh, I recommend the Camp Counselors podcast. It’s my favorite.
What innovations or advancements in FA research are you most excited about? I am most excited about the new gene therapies that are in clinical trials.
How do you celebrate your achievements, big or small? I celebrate my achievements by telling other people about them. I typically don’t keep good news to myself. Maybe I’ll get a sweet treat if it was particularly difficult to complete the task.
Is there a particular aspect of your journey with FA that you would like to share to raise awareness? Something I would like to share is that having a family while living with a disability is absolutely an attainable goal. It may look different from the traditional idea of a family, but it is still a meaningful and fulfilling experience to have and be part of.
What’s a typical day look like for you? A typical day starts when my kids wake up. My husband and I get them ready and have breakfast together. Usually, a family member comes over to help while I do physical therapy and work from home. I might take the kids to appointments or run errands during the day. When my husband gets off work, we have dinner and spend time together as a family.
What is your favorite part of the day? My favorite part of the day is bedtime. Cuddling with my kids is always the best, and finally getting a break before going to sleep is pretty great too.
What do you wish people knew about FA? I wish people knew that while I do have a disability and sometimes need help, I am still a complete and whole person. Often, people I don’t know look at me with pity, but I don’t want to be pitied. I may not be able to do everything that most people can, but that does not make me less than. My disability is a big part of who I am, but there is so much more to me than that.
Are the healthcare providers in your town familiar with FA? Is there support available from the healthcare system? Most healthcare providers I meet are not familiar with FA. However, I have yet to meet anyone in the healthcare field, especially when I was pregnant, who did not do a lot of research beforehand. All of my doctors took the time to learn about FA before seeing me, so they had a pretty good understanding of it.
Interview by
Sam Dupre