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FARAFARA Cure FA

Endrit Januzaj

This Meet the Community interview was originally published in February 2015. Endrit is now a participant in the

FARA Ambassador Program.

Name: My name is Endrit, but everyone calls me Endi.

Age: 23

Where do you call home? I live in Kosova City Deqan Village Isniq.

Relationship status? Do you have children? Married with a little baby girl.

Occupation/Employment: Parent, stay at home, I don't have work. I have finished bachelor Bank Financial and Master Branch : Financial Management.

Education: I have finished High School and Faculty.

How long have you been living (or known you are living) with Friedreich's Ataxia? I can say about five years I'm Living with FA seriously. When I was 15 I started to have problems with scoliosis and we were thinking I have only that. But my stability started to be an issue little. I travel in Germany when I have to do all examinations and genetic test. In 17 years I'm diagnosed with FA. I have surgery for scoliosis in Croatia six years before when I was 18 years and finished High School.

 

Endrit and friends.Describe your transition from walking to walker/wheelchair. It's hard to tell but with time I learned. When I was 18 I start some trouble and with time I need to take walker, and my friends help me very much to walk and my family. Because I'm first person with this disease in this suburb.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No everyone is okay. I'm first person with this disease and the last I hope.

 

What do you like to do to stay active and what type of exercises do you do to stay strong? I walk and I go in physical therapy in six days during the week to be strong with muscles. Endrit

Do you use any tech aides? if so, what works or hasn't worked for you? I don't use something, only walker bicycle Gym Fitt.

What's your most comfortable pair of shoes to wear? I wear everything, but those who feel better is Nike Puma's.

Do you have a diet plan you like to follow, and why? No I don't have something yet, but beware the food.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I think in two ways; one, it's hard to have FA and to have life change during the years. Two, sometimes I'm very nervous but I feel good I have everything. The life is beautiful. Sometimes when you think finish your in start smiled life, then one day she smiles you.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? To be strong...very strong. It's one way bad but life have this. It is the Ego street should War. What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Ohhhh......it is something that the heart trembles when I hear. Everything in this life exhaust only for coffee I dream let others. Will run like crazy...

"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? I is that I feel health and above all ask you think,like you. Just do, just live. The appearance of your external world, it is a reflection of the interior of your world; the world of thoughts. So thinking is an action from which every thing starts, a mechanism that moves All subsequent processes.

 
 
 
 
 
 

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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