Name: Julie Haffner
Age: 39
Where do you call home? Strasbourg, France
What is your education? I hold a master’s degree in English, specializing in American civilization and Hollywood cinema. I had always dreamed of being an English teacher, but I had to abandon that path due to FA. It is beyond my physical strength.
Who do you live with? I live with my mother. My father passed away three years ago.
What is a typical day for you? My days are quite busy. I wake up early and start with physical therapy every morning. I read a lot, and my personal assistants help me with daily activities like showering and dressing. Once a week, I have a 40-minute session with my speech therapist. I am a huge cinephile, so I often visit the movie theater. You should read my novel!
How long have you known you are living with FA? I have known for 25 years. I lost the ability to walk at 14 after an anesthetic product triggered the disease during spleen surgery. I was diagnosed shortly afterward.
Are there any others with FA in your family? My older sister had FA and passed away six years ago due to heart problems related to the disease.
Describe an adaptation and/or transition you have had to make due to living with FA. To stay positive and active, I keep my mind busy with new projects. I authored a novel in English, which was later translated into French. I enjoy reading, watching movies, and traveling. It is essential to have friends to share experiences with, like dining out or visiting parks.
What do you like to do to stay active? I focus on mental activities and pursuing my passions rather than physical exercises, although I acknowledge I should consider them.
Do you have any hobbies or special interests? Yes, I love cinema, literature, museums, opera, ballet, theater, traveling, and shopping. I also enjoy facials and massages for my wellness.
What is a good trick to make daily life easier? Keep busy, fill in the blanks, and keep plans. Take a nap if you are tired but avoid it too often. Stay positive and cherish the small joys.
When FA gets you down, what do you think/do to feel better? I focus on the good things I have done and the people who love me.
What is one way living with FA has positively affected your life? It has helped me cherish values and strive to be a valuable and memorable person.
What is a favorite motivational quote of yours? I do not have a specific quote, but the sun and pleasant weather deeply motivate me.
What is a piece of advice that someone with FA has given you that encourages and inspires you? I am a good person as I am.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Live your life to the fullest. Stay busy and focused on your passions. Do not give up.
What is the first thing you want to do when a cure/treatment for FA is found? Try the treatment.
“I have FA, but FA doesn’t have me.” What does this statement mean to you? It means fighting to live as long as possible. I need to survive and not let FA win.
How do you live your life in the face of adversity? By being resilient and not allowing FA to define me.
Tell us a little more about you…. I invite everyone to read my novel, “The Girl Who Can Move” or “Mémoires d’une fille qui bouge.” It is a fictionalized autobiography filled with my passion and love. If you would like details on how to order it from my independent publisher in France, please reach out to FARA and they will connect us.