Since there are 15,000 people who share the same genetic mutation, also known as Friedreich’s Ataxia, it’s important to share each other’s stories and perspectives. The FA community is bigger and closer than most people think — patients are diagnosed at different ages, stages and various locations all over the world. You never know, the person featured in these weekly spotlights could be someone you know or maybe someone you would like to get to know!
This week, we’re featuring Madelyn from Texas! She is a young, bright and loving soul with an equally beautiful face to match her personality. She agreed to answer some of our questions about her life, the diagnosis process, and some of the ways she deals with FA.
Name: Madelyn Frederick
Age diagnosed: 13
Where do you live? Plano, Texas
How many siblings (if any) do you have? I have two sisters and one brother.
Is anyone else in your family affected by FA? No
Do you have any known heart conditions (cardiomyopathy or arrhythmia)? Yes, I have cardiomyopathy and tachycardia.
Do you do physical therapy or any other form of exercising? Yes, twice a week.
What is your preferred type of exercising (yoga, weight lifting, Pilates, cardio, etc.)? Yoga, stretching, and pool exercising
Is exercise something you enjoy? Why or why not? Even though I’m tired after, I know I am helping my body.
Do you remember your very first thought when you were diagnosed? Will I ever be able to brush my hair again?
Were you aware of ataxia before your diagnosis? I heard the word “ataxia” before and knew a little bit about it, but I learn more about it everyday.
What is the most frustrating aspect of FA that you deal with on a daily basis? The fact that it takes longer to do simple tasks, or that I just have no energy for anything.
What hobby, activity or interests has FA made more difficult/taken away? Singing, writing, playing piano
How do you feel about being in public? I have always been very anxious going out in public and nervous about what others think of me. But it’s something I’m working on and I feel it’s getting better and better.
What has been the most important lesson you have learned about life so far? Don’t take anyone or anything for granted.
Is there any advice you would give to someone who has just been diagnosed or is having a hard time dealing with their progression? Allow yourself to have bad or slow days. Make sure to lean on the people around you because it’s easy to feel alone. It’s hard to narrow it down because I would say so much.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.