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FARAFARA Cure FA

Jean Walsh

 

What Next?
Hi, I am Jean. I am 50 and was diagnosed with FA about 30 years ago.

 

This is something I have been thinking of a lot lately. They are going to find a cure for FA. Of course, it can never be soon enough, but it will come. When they do I am going to be as ready as I can be emotionally, physically and spiritually. I eagerly anticipate a cure and try to do what I Jeancan to make it happen. I think it is going to be harder than I guess/anticipate.
For 30 years I have known I had a chronic disease. For twentyish years I have identified with and identified myself as a person with a physical disability. Chronic disease, disability, Jean Walsh [yes talking about myself in the third person ;)] are so inextricably intertwined right now. I am not my disease, but it is complicated. My sense of identity is, right now, married to chronic disease and disability. While disease and disability do not run my life, they are facts of my life. And to me, disease and disability have given me opportunities to be strong, pursue happiness and be giving that I might not have had otherwise. I feel like I am a better version of me because I have FA. Maybe I would be the resilient person I think I am now if I didn’t have FA ... something I’ll never know and is not, to me, worth much thought.


Obviously there are a host of things about FA I do not want including and especially having people I love have it. What happens to my sense of self when I don’t have FA? Don’t get me wrong I am looking forward to this challenge, but I do think it will be a challenge. And what about our caretakers? They spend a great portion of their lives taking care of and/or worrying about us. How will they meet the challenge of not having to have such a fixation on our well-being? Nice problems to have, I am not complaining at all, just happily and honestly looking forward to the challenges that I think lie ahead.


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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