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Kim Swiatek

KimSwiatek1Name: Kim Swiatek

Age: 51

Where do you call home? Tucker, GA

Education: I chose being a mother and housewife. Progression has stopped any other career goals.

What is your relationship status? Do you have children? Raised a wonderful son, I also have a beautiful daughter-in-law and granddaughter. I’m divorced and live with my boyfriend of 9 years.

What's a typical day for you? Basically get up, eat, get ready for the day with my caregiver. Play on computer, watch Netflix then sometimes get out and go shopping.

How long have you known you are living with FA? I was diagnosed at the age of 25. It was in March of 1992 before the gene was discovered. I went through 5 neurologists who didn’t have a clue about my balance and coordination. Finally found a doctor in Atlanta who knew right away what it was, as she had FA patients.

Are there any others with FA in your family? My sister had it. She passed away in 2016.

Describe your transition from walking to walker/wheelchair: I noticed clumsiness in High School and could not physically keep up with my peers. I would hold on to furniture and people as it progressed, then started using a walker after I was diagnosed. I used it for 5 years before I realized I needed a wheelchair. The hardest transition was having to give up driving, which I did at the same time. I realized I had to give it up after having a wreck with my son in the car. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I try to eat right. I’m a recently diagnosed diabetic now so it’s getting more difficult. For exercise I try to stay in my manual wheelchair as much as possible. I have an electric one that I can use. Basically I follow the golden rule of use it or lose it. I do that by continuing to use whatever ability I still have as much as possible.

Do you have any hobbies or special interests? Movies, shopping and visiting my granddaughter.

What is a good trick to make daily life easier? I just don’t let little things bother me anymore. And I take naps when I need them.

KimSwiatek2When FA gets you down, what do you think/do to feel better? Talk to my boyfriend and/or talk about it in Facebook Groups.

What is one way living with FA has POSITIVELY affected your life? It brought me into an international community of people I can relate to.

What is a favorite motivational quote of yours? “This too shall pass!”

What is a piece of advice that someone with FA has given you that encourages and inspires you? Always do the best you can and keep on smiling! My sister would say that before she passed away.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Strap yourself in, you are in for a hell of a ride! No matter what it is you do, it’s going to be spectacular, and all you can do is laugh about it later!

What is the first thing you want to do when a cure/treatment to FA is found? Buy me some nice shoes and go dancing!

"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 just means what it says, I live my life as best I can, I don’t care what title you want to give this disorder. It is what it is, and life goes on.

Tell us a little more about you...I really can’t take FA seriously. Laughter is how I roll and I deal with it by finding the humor in everything. A day without laughter is a wasted day in my opinion.

BrittanySommerfield mtc sig

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:


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