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FARAFARA Cure FA

Telling Friends and Family about FA

So how do you tell friends, family, and strangers about Friedreich's Ataxia? I think the answer is different for everyone, but I will tell you how I deal with this.Regina and friends!

I will start with family. As I mentioned in my bio, I moved to Florida 7 years ago without family. We are all pretty spread across the US. My immediate family will ask how I am doing but we never go into much detail. They all have looked at the websites that give the facts about FA, but we do not discuss the "bad" stuff that may happen. So we briefly talk about how I am doing on our phone calls and move on to other subjects. I feel it keeps the family more positive because it is not discussed in depth, even though we all know the facts.

Telling friends is COMPLETELY different! See my family HAS to know what I have and what may happen to me or if my siblings are carriers. With my friends I guess I try to be more protective. Most do not even ask me what I have for a while too, but when they do I try to keep to the simple facts. I tell them what I have (they of course have never heard of it) and I say the three basics...FA affects or legs, speech and heart. Then I HOPE they do not go home and Regina and friends!Google! I do not want them to feel sorry for me, or feel sad that I have this awful life shortening disease. I want to just be the fun friend that happens to be in a wheelchair! I do have a few friends that have looked at all the sites, and links I put on Facebook and they admit it is hard for them but I know it is because they care so much about me.

Strangers can be tricky! You get two types...they ones that ask rudely "what happened to you?" or the ones that ask nicely and genuinely. To the first I say I was born with it (in the same tone they asked) and see if they become friendlier and ask about it. If they seem genuinely interested I go into more detail with them about FA. I talk about FARA, the Ride Ataxias, and am not scared to tell them how it affects our bodies. To me the more people that know about FA the better. Awareness and education is power to fight this, the more that know, the more people can or may be willing to help. And if I inspire someone maybe they will go home and tell them about how they met someone with FA...so if I tell one person, I may really be reaching many, many more.

ReginaRegina

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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