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FARAFARA Cure FA

Erin Kiernan

ErinKiernan1Name: Erin Kiernan

Age: 26

Where do you call home? I live west of Baltimore, Maryland.

Education (degree(s): Received my BA in Political Science at Edinboro University of Pennsylvania in May of 2012 and am still actively seeking employment.

What is your relationship status? Do you have children? Who do you live with? I am in a loving relationship with a wonderful, TAB (temporarily able-bodied) man. We really want children, especially me, but we are waiting a few years for the time to be right, financially. Our home is within my parents’ basement apartment due to finances right now.

What's a typical day for you? I am currently unemployed, but I am actively seeking job opportunities as well as trying to get interviews done. As for now, I have an aide come to assist me twice a day Monday through Friday with various activities of daily living. We perform professional work as well as having fun in the community.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed for 19 years. Technically, I was one of the first people in the state of Maryland to be diagnosed with Friedreich’s Ataxia with the blood test. On October 7th, 1996 by Kennedy Krieger hospital in Baltimore, Maryland. I am still seen by the neurologist, who helped me through the year or so of testing, at Johns Hopkins.

 

Are there any others with FA in your family? No. We have searched through our family tree, and, as far as we know, I am the first and only case.

Describe your transition from walking to walker/wheelchair. I started from walking then transitioned into a manual wheelchair then into a power chair (part time). Next, I transitioned to a power chair (full time) and finally I lost my ability to see. I have always been a major stubborn, pain in the butt when it comes to having to transition into another lifestyle because I do not ever want to give up my independence. Though, I have learned that you can’t, necessarily, prevent the changes that are happening to your body. However, you can try to keep exercising and your muscles strong to prevent the change from happening very quickly. It still sucks a lot, but there isn’t much that you can do except keep going as independently as you possibly can.

ErinKiernan2What do you like to do to stay active and what type of exercises work for you to stay strong? I have learned how to do a few exercises or stretches from my PT and my OT, but I am on the constant lookout for more exercises and stretches. I know quite a few people on our Facebook page make suggestions of different exercises that I look into trying a lot.

Do you have any hobbies or special interests? Well, I have several hobbies and special interests. Most of my hobbies have to do with my significant other, our family, our friends, and going out in the community. Yet I do have a couple hobbies and interests that I like to do at home on the computer, baking/cooking, or hobbies on my own time and place.

What is a good trick to make daily life easier? A good tip is to understand that everyone has a hard life. Our life is just as hard as everyone else’s, and, even though it is only going to get harder, you can’t do anything to make life any easier. So, you might as well just smile and laugh at yourself.

When FA gets you down, what do you think/do to feel better? That is a very tough question to answer. Usually I prefer to be left alone for a while. Either I go to bed in my room and cry or sulk myself to sleep or I go to the bathroom, where I am left on my own in a room, to cry and sulk, or I sit in front of the TV turned to a very comical show that will eventually take me from pouting and crying and sulking to laughing. Sometimes it feels that the disorder has taken away my ability to scream, yell, and take out my anger physically on objects as I usually would, so instead my anger comes out in tears.

What is one way living with FA has POSITIVELY affected your life? Honestly, my significant other is more of the positive thinker that would be the best at answering that question. Friedreich’s Ataxia has made me a realist, it has made me realize things from every angle and perspective. Being a realist, has made me who I am, so I do not tend to think of my FA in a positive/fantasy sense.

What is a favorite motivational quote of yours? I have several favorite quotes. In the Washington Post I read, “Failure is not the falling down but the staying down.”- Mary Pickford. Another favorite quote of mine comes from Harry Potter and the Order of the Phoenix, “We've all got both light and dark inside us. What matters is the part we choose to act on. That's who we really are.” – J.K. Rowling.

What is the best advice you could give to a person who has been newly diagnosed with FA? Remember that everything is hard for everyone, not just you. So, just keep on going as everyone else does “Same stuff. Different day.” always happens to everyone, so you can’t let the little stuff get to you. Look at the big picture and the entire picture: the good, the bad, and the ugly. Again, it isn’t a perfect world for anyone, so don’t let the little things get to you, keep going.

What is the first thing you want to do when a cure/treatment to FA is found? Again, you might want to ask my significant about that one because I have never really thought about it. My mind doesn’t work that way; I am a realist.

"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 am more of a literal person, so it means what it literally says. It is a true statement, though. You have the disorder, but that disorder is not all of WHO you are. You are a person just like everyone else, except you have an additional thing to add to who you are. Everyone has additional things to add to who they are. So, FA is just one of mine.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

LaurenWilliamsmtcsignaturelauren 


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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