Name: Alijana Shakya
Age: 30
Where do you call home? Nepal
Education: I am a business student, but I want to be a [disability] activist.
Who do you live with? My mom.
What’s a typical day for you? Stay home with parent.
How long have you known you are living with FA 2013. I was told I might have the disease after telling [my doctor] my condition was getting worse, that I can’t even do my daily activities normally and I was getting too clumsy and twisted my ankle and went to hospital. I got FA diagnosed on paper in 2019.
Are there any others with FA in your family: No, I am the first.
Describe your transition from walking to walker/wheelchair. I transitioned from walking to walker to wheelchair to prevent accidents, to be productive, high functioning, to be less of a burden to others and for independence.
What do you like to do to stay active and what type of exercises work for you to stay strong? Doing housework, working, sitting in a wheelchair. My exercise routine is climbing stairs and holding bars.
Do you have any hobbies or special interests: Cooking, writing articles.
What is a good trick to make daily life easier: Be confident in your flaws and accept them with a positive attitude.
When FA gets you down, what do you think/do to feel better: When FA gets me down, I count pros of being disabled and still able to do things in my way with not much expectations.
What is one way living with FA has POSITIVELY affected your life: Never give up.
What is a favorite motivational quote of yours: “You are special to get FA and a fighter.”
What piece of advice that someone with FA has given you that encourages and inspires you? You are beautiful with it.
What is the best advice YOU could give to a person who has been newly diagnosed with FA: “Welcome to the group and you are a fighter.”
What is the first thing you want to do when a cure/treatment for FA is found? Tell everyone.
Tell us a little more about you: I am a normal woman who wants to live my life fully with no regrets.
Interviewed by
Dragana Obadic