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FARAFARA Cure FA

Aimee Clifford

AimeeClifford1Name: Aimee Clifford

Age: 29

Where do you call home? New Brunswick, Canada

Education (degree(s): I am a licensed makeup artist.

What is your relationship status? I have a boyfriend, but we don't have any kids. I also live with my parents.

How long have you known you are living with FA? I was diagnosed with FA when I was 14.

Are there any others with FA in your family? My grandmother thought she had MS, but my doctors say she was misdiagnosed.

Describe your transition from walking to walker/wheelchair. I walked all through high school, and a few years after, I sometimes walked arm and arm with people. When I went to beauty school, I used a mail cart for independence. I walked with a cart for quite a while afterwards and when I went shopping I would use a shopping cart. I still don't want to be dependent on a wheelchair and my physiotherapist thinks I'm strong enough to walk with my cart. She wants to get me a walking device to use around the house. I still use stairs holding someone's arm. 

What do you like to do to stay active and what type of exercises work for you to stay strong? To stay strong, I move myself around with my legs and I stand by holding a bar to get out of my chair. I try to stand for a few minutes at a time. I'm retaining fluid right now so it makes getting up off the floor more difficult. Hopefully I'll get walking and moving more and the fluid will go and I'll have more energy.

AimeeClifford2Do you have any hobbies or special interests? I love to hunt, fish and go for drives on my Argo. Target practice is my favorite and I'm actually a pretty good shot!

When FA gets you down, what do you think/do to feel better? When FA gets me down, I usually cry and swear or get mad. Then I know I'm not the only one who feels like this and what good will it do being upset? I just pray for strength and hop tomorrow is a better day.

What is one way living with FA has POSITIVELY affected your life? One positive is that I am a stronger person. I also understand everyone's hurt or pain and I'm very emotional. I try to be an inspiration for others by doing some of things I love to do, differently, to show people to not give up on those things just find a way that works for you.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't give up on the things that you love, just find a way that works for you.

What is the first thing you want to do when a cure/treatment to FA is found? If there's a cure, first thing I'd do is go for a walk on the beach by myself.

"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? The statement to me means that FA doesn't have complete control over me. I have to do things differently than able bodied people, but I'm not going to stop trying!

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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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