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FARAFARA Cure FA

Xhesika Peza

XhesikaPeza1Name: Xhesika Peza

Age: 22

Where do you call home? Tirana,Albania

Education: I am studying pharmacy.

Do you have children? No, but I live for that day.

What is a typical day for you? School, physical exercises, and 20 minutes walking

How long have you known you are living with FA? I had symptoms when I was 17 years old,but I refused going to a doctor. In my country there is little specialized medical training for rare disorders, so I traveled to Vienna, Austria. There I was diagnosed when I was 19 years old.

Are there any others with FA in your family? No.

Describe your transition from walking to walker: I still can walk. (In my opinion my walking now is better than before diagnosis!)

Do you have any hobbies or special interests? Traveling, reading books, practicing all the foreign languages that I speak! 

When FA gets you down, what do you think or do to feel better? I dance to my favorite music.

What is one way living with FA has positively affected your life? I have met my physiotherapist, who is a wonderful person. Now, I don’t worry about as much housework as I use to do before. I can use the public transport free. I don’t have to wait as long in airport lines!

What is a favorite motivational quote of yours? “You never know how strong you are, until being strong is the only choice you have.”

What is a piece of advice that someone with FA has given you that encourages and inspires you? I have FA, but FA doesn’t have me.

What is the best advice you can give to someone who is newly diagnosed with FA? No one fights alone.

I have FA, but FA doesn’t have me. What does this statement means to you? I am not defined by my disabilities.

MattLafleur sig 16 mtc


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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