Name: Roxanne
Age: 41
Where do you call home? Northampton, UK
What is your education [degree(s)]?
BA- History- Warwick University- 2006
BA- English Literature- Open University- 2016
MA- Modern British History- Warwick University- 2008
Who do you live with? Alone, with my pet guinea pig called Caramel
What’s a typical day for you? I have 2:1 24hr care giver support.
How long have you known you are living with FA? When and how were you diagnosed? My parents realized there was something “wrong” with me when I was about 5 because of the way I walked, and so I was taken to many doctors throughout my childhood that were trying to figure out why. My eventual diagnosis came when I was about age 9, which was way before it was possible to diagnose FA genetically in 1993. I was taking part in research for vitamin E and Co Enzyme-Q-10 when the gene was first discovered that causes FA in 1997. So, I was able to get my diagnosis confirmed genetically pretty much straight away.
Are there any others with FA in your family? My brother RIP
Describe your transition from walking to walker/wheelchair. My dad believed in making me TRY to keep walking as long as possible even though I was pretty desperate to stop by the time I got my first wheelchair.
What do you like to do to stay active and what type of exercises work for you to stay strong? I can barely make any voluntary movements, but I do have a twice daily leg massage and passive movement physiotherapy.
Do you have any hobbies or special interests? I listen to audiobooks all the time. My favorite genres are Classic, Fantasy, and Sci-Fi.
What is a good trick to make daily life easier? Keep a positive attitude.
When FA gets you down, what do you think/do to feel better? I work very hard to train my mind to just stop thinking thoughts that get me down.
What is one way living with FA has POSITIVELY affected your life? It is completely impossible for me to realistically imagine living without FA, and I am in complete acceptance of who I am.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Keep smiling and carry on.
What is the first thing you want to do when a cure/treatment to FA is found? I am far too realistic to think that would be the end of my disability, but I would like to go traveling if I could.
How do you live your life in the face of adversity? Try to think positively.
Interview by
Mary Nadon Scott