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FARAFARA Cure FA

Opportunities for Understanding

Here is the story of how I told family, friends and complete strangers that I have Friedreich’s Ataxia…Lake

When I was diagnosed 11 years ago, my mother & father’s reaction was chaos. They researched as much about FA as they could and grasped for anything that could possibly help me live a “normal life.” But days turned into months, which turned into years and here I still am with FA which is progressively getting worse. So since there is no immediate concern it was replaced with “How are you doing?” once or twice a year. I have a large family so any questions about me were immediately directed towards my dad, so I never had the opportunity to inform them myself. I honestly believe that a few of my family members don’t even know what FA stands for or what it involves.

Telling my friends was difficult and to some quite easy. Difficult because some friends I told became distant to the point that we don’t converse anymore. I guess it was hard to deal with the facts and details of FA. But my “true” friends have stuck by me no matter what, and treat me like a person and not a disease. They ask questions and want to know details. They are my family. Social networking sites such as Facebook have really allowed me to inform everyone, to educate and have an understanding.

 

Everyone else is such a wide range. I even have complete strangers ask what’s wrong with me to acquaintances who instead of asking me any questions, ask my partner. She does happen to know a lot, but I am the one with FA…so please ask me!Lake and her partner, Tiffany. Lake and her partner, Tiffany.

For example; I was recently checking out at a Target store, a couple of weeks ago and the cashier asked why I was in a wheelchair. But it wasn’t nice and inquisitive, it was sarcastic. I then asked him if he asks everyone in a wheelchair why they are in one? He said no…he just thought I was playing around to see what it was like in a wheelchair. I responded back with Umm…no, I have a disease. He surprisingly didn’t talk or look at me anymore. The “D” word scares people.

I however do enjoy educating people, but I have missed crucial opportunities to do so. My perspective with FA is instead of taking it personal or getting my feelings hurt, I do my best to enjoy life. It is an ongoing process, educating my family, friends and those who come into my life.

Lake

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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