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FARAFARA Cure FA

Brittany Waters

BrittanyWaters1Name: Brittany Waters

Age: 30

Where do you call home? Maine

Education: Bachelor's degree in Public Relations

What is your relationship status? Do you have children? Married with 2 small children.

What's a typical day for you? I wake up really early with my toddler and then I keep both kids alive all day.

How long have you known you are living with FA? I started to realize there was a problem when I was a senior in high school. I wasn't diagnosed until I was 22 though, because I put off the test for a while so I could focus on my first couple years of college. I was a little afraid to know the truth too.

Are there any others with FA in your family? As far as I know, I'm the only one. Nobody else wants to be tested though.

Describe your transition from walking to walker/wheelchair. I still furniture walk at home, but I had to start using a wheelchair when I go places about two years ago. The hardest part for me has been getting over my pride. I imagine that people view me as a lesser human because of my obvious disability. I deal with it by being as present as I would be without the chair. I fight the urge to try to disappear. 

BrittanyWaters2What do you like to do to stay active and what type of exercises work for you to stay strong? My kids give me all the exercise I need.

Do you have any hobbies or special interests? I like to grow flowers and do crafty things. I also love to read. I'm very grateful that FA doesn't take our mental faculties.

When FA gets you down, what do you think/do to feel better? When FA gets me down, I allow myself some time to process why I'm feeling the way I am. Then I move on. I focus on the people I love and I pick myself up for them.

What is one way living with FA has POSITIVELY affected your life? I have a really good reason to stay home with my kids. I would feel more pressure to go back to work if it weren't for FA.

What is a favorite motivational quote of yours? "If you don't like it, then fix it." It's not always possible to completely fix the problems FA brings, but it's always possible to change little details to make it more manageable.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't make assumptions about how your future will look. It's impossible to know what your progression will be like, so try not to let your imagination take the reins. You will end up grieving things you won't actually have to give up. In my experience, the reality of my FA is a lot better than my imagined FA.

What is the first thing you want to do when a cure/treatment to FA is found? I would pick up my babies.

"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? It means that I don't belong to my disability. I still get to decide how my life goes.

MaryNadonScott mtcsig 17


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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