Name: Luciana Grasiele Nogueira
Age: 36 years old
Where do you live? Juiz de Fora, Minas Gerais, Brazil
Education: Bachelor’s degree in Education and Specialization in Human Development (unfortunately, due to the worsening of my symptoms, I was unable to practice my profession).
What is your relationship status? Do you have children? -OR- Who do you live with? Divorced. I have an 8-year-old daughter and I live with my daughter. My mother lives near me and is always helping me with everything.
What is a typical day for you? Wake up, make breakfast, take my daughter to school and rest. In the afternoon I help my daughter with her schoolwork, prepare dinner or a night snack, take a shower and go to sleep.
How long have you known that you have FA? I was diagnosed 10 years ago by a neurologist after being examined and 7 years ago I had the confirmation with a genetic test. Receiving the diagnosis was desperate. I have been undergoing psychological counseling ever since. I fight daily to maintain high self-esteem and a positive mindset.
Is there anyone in your family with FA? No
Describe your transition from walking alone to using a walker/wheelchair: I currently use a walker. Accepting that I need a support device to walk was extremely difficult. I resisted it for a long time because I felt very embarrassed. In addition, the lack of accessibility in places and the curious looks of people always disturbed me a lot. Today I am less emotionally vulnerable regarding these challenges, but I often still feel depressed or angry.
What do you like to do to stay active and what types of exercises work for you to stay strong? I go to physical therapy twice a week.
Do you have any hobbies or special interests? Reading and writing
What helps you in living with FA? Believing in life after death, reincarnation, past lives and, most importantly, a spiritual purpose for having this disease today helps me a lot to see difficulties as learning experiences. I believe that everything is temporary and an opportunity for spiritual evolution.
When FA gets you down, what do you think/do to feel better? I write my feelings in a journal as a way of letting off steam.
How has FA POSITIVELY affected your life? It was very difficult to come to this conclusion, but today I see that I have more free time to do what I like and I have matured a lot. I am less insecure and I love being alone.
What is your favorite motivational quote? “To be yourself in a world that is constantly trying to make you something else is the greatest achievement.” Ralph Waldo Emerson
What is the best advice you could give to someone who has recently been diagnosed with FA? “I know that nothing I say can change this moment, but I want you to know that you are not alone. Your life still has value, meaning, and room for beauty, even in the midst of pain. Allow yourself to feel, ask for help when you need it, and remember: you are still you—with your story, your strength, and everything you love. And I am here, with you, step by step.”
What is the first thing you want to do when a cure/treatment for FA is found? Ride a bike. I loved it.
“I have FA, but FA does not have me.” What does this statement mean to you? How do you live your life in the face of adversity? Not giving into the disease is seeing it as a personal characteristic like any other (very challenging, but just a personal characteristic). I adapt and find my own ways to do what I want or need.
Tell us a little bit about yourself: In my day to day life I try not to think about the hardships and focus on the positives. I live one day at a time and try to make each day special.
Interview by
Natache Iamaya Gomes