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FARAFARA Cure FA

Manoj Dahal

Name: Manoj Dahal

Age: 36

Where do you call home? Changunarayan, Bhaktapur, Nepal

Education (degree(s): Masters in Business Studies from Tribhuwan University, Katmandu Nepal. Completed in 2007 but being FA, I am without job. Here in Nepal, nobody wishes to take me as an employee because of my physical condition as we do not have any accessible environment for disabilities.

Who do you live with? I am single, living with my parents.

What's a typical day for you? I am staying at home making entire world within four corners of my room.

How long have you known you are living with FA? (When and how were you diagnosed?) Since 1995, I have been FA. When I visited the doctor at Bir hospital in Kathmandu by checking my symptoms, he diagnosed me as FA. I had got my MRI also.

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

Describe your transition from walking to walker/wheelchair. From 1995,I walked with support of my friends. When I used to walk on my own, other people used to call me a drunkard. After 2010, I stay most of the time in my home. Once or twice in a month when I go out to visit or for special purpose, two of my friends catch me to support walking because we have no good accessible wheelchair in our place. That's why I have to make four corners of my room as entire world.


What do you like to do to stay active and what type of exercises work for you to stay strong? I am doing some physical exercises and YOGA myself which is easy for me to do. I do it three times a day.

Do you have any hobbies or special interests? My special interest is to be a good politician.

When FA gets you down, what do you think/do to feel better? I feel as there is no equality in 5  fingers of my both hands, so I accepted it.

What is one way living with FA has POSITIVELY affected your life? I can concentrate in my study and never got involved in alcoholism.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Accept the problem which we cannot change.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't worry FARA is doing for us hopefully to find cure. We can do everything but in different way than others.

What is the first thing you want to do when a cure/treatment to FA is found?  I would like to grab the opportunities to view the natural beauties of my country by going trekking.

"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? FA affects humans but humans don’t affect FA.

Tell us a little more about you… When I finished my school in 1995, I started having walking problem. After finishing my school, my parents couldn't afford for my further studies and my society also tried to convince to stop my studies. I thought I have to continue my study and decided to be financially independent. For that I used to work as a tour guide in my local city Bhaktapur. I used to earn a few money through that work and pay my schooling fees and other expenses. I did it for 15 years long and it made me very weak. Then I stopped going outside as there is no accessible environment. In 2011 I had four wheeler bike (moped) to go for job on my own. Due to my weakness I met an accident and I was bedridden for 10 months. Nowadays I have to stay at my home without job. I am searching for job but I cannot get any.

*A note from Stephanie....Manoj and his family were greatly affected by the 7.8 magnitude earthquake centered just outside of Nepal's capital city of Kathmandu on April 25, 2015. Thankfully Manoj and his family are unharmed and safe! Their home was badly damaged in the quake so they have been living in a tent but are soon relocating to a new house. Despite the devastation of his country and the hardships he is facing, Manoj was very excited about participating in a Meet the Community interview here on the FARA Ambassador blog and remains hopeful for treatment and a cure for Friedreich's Ataxia. Thank you for sharing your life and hope with us, Manoj!

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

 


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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