Name: Melanie
Age: I am 53 years old
Where do you call home? I live in Baden Würrtemberg, Germany
What is your career? I worked in a bank and am now retired.
Who do you live with? I am married, have a son, and two stepdaughters.
How long have you known you are living with FA? When and how were you diagnosed? I have been living with FA for 18 years. I received the diagnosis only 5 years ago through a genetic test at the University Hospital Tübingen.
What do you like to do to stay active and what type of exercises work for you to stay strong? I regularly do different therapies, such as strength training, physiotherapy, occupational therapy, speech therapy, and aqua jogging. It keeps me physically and mentally fit because I am active.
Do you have any hobbies or special interests? My hobbies are my therapies; in addition, I enjoy painting and reading. I write texts about myself and my life with FA, which can be read on my blog on Facebook and Instagram. And I am engaged with the Friedreich’s Ataxia Support Association in Germany.
What is a good trick to make daily life easier? It helps me to accept every day without judgment and to make the best of it.
When FA gets you down, what do you think/do to feel better? I allow myself a break. I give space to the bad thoughts. When everything has been mourned and lamented enough, it goes on. There are so many reasons to be happy!
What is one way living with FA has POSITIVELY affected your life? Through FA, I live more in the here and now. I am more grateful for everything that is. I no longer put off anything for later. And I have met so many valuable people.
What is a favorite motivational quote of yours? “There is always a reason to be grateful.““ Love is everything.“
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Take your time to accept the illness and join an organization with like-minded people.
What is the first thing you want to do when a cure/treatment to FA is found? I think the joy of it would make me cry.
“I have FA but FA doesn’t have me.” What does this statement mean to you? FA is part of me, but it is only a part of me. There is so much more that makes up my personality. I live my life without or also with FA.
Are the healthcare providers in your town familiar with FA? No, the disease is rather unknown. In selected ataxia consultation hours at university hospitals, there are specialists in the area of FA.
Is there support available from the healthcare system? Yes, most of the costs are covered by health insurance.
Do you know anyone else in your country with FA? If so, have you ever met them? Yes, I know many people with FA through the german association, Instagram, and Facebook. We exchange ideas online or also meet in small groups in person.
Did your diagnosis impact your friendships and relationships? If so, in what way? Yes, superficial friendships have broken. The relationships that remain have become more intense.
What do you wish the general public understood about FA or disabilities? I wish for more acceptance, interest, and integration from society.
Interview by
Jakob Mitterhauser
Please note that this post represents an individual’s experience and is not medical advice. Please consult with your doctor about the safest and best way to manage your FA diagnosis.