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FARAFARA Cure FA

Asad Rafi

Name: Asad Rafi
 
Age: 45
 
Where do you call home? Karachi, Pakistan
 
Education (degree(s): I could not pursue with my higher studies after I was diagnosed with FA at the age of 17. I was very much interested in learning computers and joined IBM Pakistan where I worked for 15 years. I love to write and my articles have been published in various papers and magazines including articles on FA. I have recently written my first book titled “Steel Wheels”. 
 
What is your relationship status? Who do you live with? I am single and live with my parents.
 
What's a typical day for you? After getting up the first thing I have is physiotherapy on my bed for half an hour. I have physiotherapy six days a week. The rest of my day varies and I do various things. For three to four days of the week I love to swim for an hour. On other days I go for lunch with my friends and parents. Once a week I go to the office to do my own work. In the evenings I tend to relax after having a long and tiring day. I tend to watch TV, listen to music, go on the internet etc. I have a Toastmasters Meeting on every Wednesday from six to nine which I look forward to. If there are any other meeting I have to go to or attend any other functions I do.
 
  How long have you known you are living with FA? (When and how were you diagnosed?) I have been known to have FA at the age of 17. In the beginning for three years I used a walker, until at the age of 20 it became impossible for me to walk and I was transferred into a wheelchair. I have been in a wheelchair for 25 years now. I was diagnosed with FA in London and went to America for FA to be confirmed. 
 
Are there any others with FA in your family? No I am the only one.
 
Describe your transition from walking to walker/wheelchair. I noticed that my legs had started to become very weak and it was getting impossible to walk without support and there was a lot of risk involved in my getting hurt, which is why to prevent me from getting injured I was transferred into a wheelchair. The doctor in America who diagnosed me was very jolly and told me the benefits of a wheelchair in a very comforting manner.
 
What do you like to do to stay active and what type of exercises work for you to stay strong? I love to swim, do physiotherapy, go to the gym once a week and also go for massage weekly to keep my leg muscles strong.
 
Do you have any hobbies or special interests? I very much love to watch sports, listen to music, go on the internet and watch my role models. Besides that being a motivational speaker I love listening to motivational speeches.
 
What is a good trick to make daily life easier? One has got to stay positive, and always look at the bright side of life. One should do things which you enjoy doing and life will become much easier and more enjoyable.
 
When FA gets you down, what do you think/do to feel better? Like I said doing things which I like doing for example swimming, watching sports or listening to music. All these things make me feel so me feel so much better and they transform to a separate place. 
 
What is one way living with FA has POSITIVELY affected your life? FA has taught me the importance of trivial things in life. It has taught me the advantages of being in a wheelchair. Most importantly FA has helped me to become a motivational speaker and share my story with other individuals. I probably would have not become a motivational speaker had I not had FA.
 
What is a favorite motivational quote of yours? “It is not what happens to you, It is what you do about it”. This quote is by world renowned motivational speaker W. Mitchell who is also in a wheelchair.
 
What is piece of advice that someone with FA has given you that encourages and inspires you? I don’t know many people who have FA. To never give up in life, to struggle is most important in life and to always believe in your abilities are the most inspiring things you hear when you are in a wheelchair because of FA. 
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would always tell him to have strong faith in God, never get frustrated in life and always keep on fighting.
 
  What is the first thing you want to do when a cure/treatment to FA is found? Travel the world and go to watch sporting events.
 
"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 try to live my life to the fullest and am a positive person. It is natural to feel low or down when you have FA but to just do nothing about it and feel sorry for yourself will achieve nothing. As a motivational speaker in a wheelchair said in the beginning there were 10,000 things I could do and now after the accident there are 9,000 things I can do. Either I can just dwell on the 1,000 things I can’t do or I can concentrate on the 9,000 things I can do. The latter is the way I chose to live my life doing things to the best of my capability and having faith in God.
 
Tell us a little more about you…..I was born in Lahore in 1969 and am the only child of my parents. I had a normal childhood and had a number of dreams while growing up. At the age of 17 I began to lose my balance, fall down frequently and used to be feel breathless while walking. I was diagnosed with FA at the age of 17 and was transferred into a wheelchair when I was 20. It was very tough on me and my parents for the beginning 2 to 3 years. All my dreams were shattered. Gradually I began to accept FA and live life in a positive manner. I always loved to write and wrote a number of articles. I was persuaded by my family to write a book on my experiences. In the meanwhile I became a motivational speaker, sharing my story with other individuals. I have been getting great and inspiring feedback from all over. 
 
I was told by my friend to join the Toastmasters Club which is a public speaking club. The Toastmasters Club improved my public speaking by leaps and bounds and made me a more confident and able speaker. I had the good fortune of speaking at various clubs, forums and workshops. I also gave talks at Toastmasters Clubs in London. I always look forward to attending Toastmasters meetings every Wednesday in Karachi and they are an important part of my life.
 
I have recently written my first book with the help of a publisher titled “Steel Wheels.” It is my story about I acquired FA and how I coped with it. The various things I have learnt to do with FA. I have received great feedback and everyone who has read the book has loved it. I would personally like you all being ambassadors of FA to please read it. If you do want to get to know me better this book is the answer. Do let me know how many of you would be interested in reading this book. Please contact me at asad.rafi@gmail.com.
 

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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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