The Friedreich’s Ataxia Patient Spotlight is another method of raising awareness for Friedreich’s Ataxia. With an understanding of a rare disease and how crucial it is to get the word out, we are excited to share people’s stories and perspectives from all over the world. This week, coming to you from Dublin, Ireland, we have Laura Wright. With a knack for fashion and makeup, she makes life look good.
Name: Laura Wright
Age diagnosed: 15
Where do you live? Dublin, Ireland
How many siblings do you have? One younger sister
Do you have any known heart conditions? Cardiomyopathy
What device do you use for your mobility? Wheelchair
Did insurance help pay for your device? No
If you use a wheelchair full-time, how long was it after your diagnosis did you become dependent? About 10 years
Are you single, in a relationship or married? Single
Do you do physical therapy or any other form of exercising? Yes, I’m a wannabe gym bunny!
If so, how often? I go to the gym three times a week and work out at home every other day.
What is your preferred type of exercising (yoga, weightlifting, Pilates, cardio, etc.)? Cardio and weightlifting
Is it something you enjoy? Definitely
Why? It’s an escape for me and I get to feel better at the end of it, too. #Winning
Have you had spinal corrective surgery? No
Were you aware of ataxia before your diagnosis? No, I had never even heard of it.
Who was with you that day? My parents. I was actually in the hospital being assessed with constant back pain which turned out to be scoliosis and that’s when the doctors picked up on my ataxia.
How do you feel about being in public (anxious, comfortable, doesn’t bother you)? Comfortable — though definitely a little anxious, too.
Whats the biggest inconvenience when going out in public? Steps and the loo.
How do you deal with it? I just won’t go places if they are full of steps and if it’s for an important event like birthdays, christenings, weddings, etc., I will limit fluids and hold my bladder until I get home.
Do you have problems with accessibility issues often? Is where you live easy to access or navigate? Is your town mostly flat or completely opposite? I wouldn’t say I have accessibility problems really, just the places that aren’t great for me are the places everyone is! I wouldn’t be able to do transport or get through town on my own, even though it’s all very accessible here. I just need to keep building up my confidence, I think.
What is your biggest fear with having FA? Having to stop.
How does your diagnosis affect your relationships with your friends and family? Your 30s are for the lessons even though the lessons started for me in my 20s (your selfish years). I have done it backwards — I’m being selfish now. Thanks to my situation, I get to see family and friends more clearly and know they’re good family and friends but I have to keep on keeping on for me!
What has been the most important lesson you have learned about life so far? Broken crayons still color.
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.