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Megan Sonja Clegg

Sandra Johnson Name: Megan Sonja Clegg

Age: 25

Where do you call home? UK

Education/Career: Forensic science diploma, health and social care diploma

Who do you live with? My parents.

What’s a typical day for you? I usually just stay at home.

 

How long have you known you are living with FA? I was diagnosed at 11, but had FA since birth. My dad noticed that I had something wrong with me when I started to walk but it took 9+ years for doctors to do any tests.

Sandra Johnson Are there any others with FA in your family? My sister.

Describe your transition from walking to walker/wheelchair. I went straight into a wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? I just use my upper body to keep my strength up.

When FA gets you down, what do you think/do to feel better? Meditation and being in a quiet place helps.

What is one way living with FA has POSITIVELY affected your life? It has made me see who people really are.

What is a favorite motivational quote of yours? “Dying is easy, living is hard” - John Green.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Just be you.

What is the best advice YOU could give a person who has been newly diagnosed with FA? Never give up on your dreams.

Sandra Johnson What is the first thing you want to do when a cure/treatment to FA is found? I want to dance in the rain.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? It means that I have FA physically but FA does not define who I am.


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