Living with Kennedy's Disease: Library of Medicine

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Sunday, April 21, 2013

The Genetic Home Reference Library

The United States Library of Medicine has published the “Genetic Home Reference - Your Guide to Understanding Genetic Conditions.” I found this website to be a very user-friendly, yet a comprehensive guide to most genetic disorders including Kennedy’s Disease (SBMA). The explanations are well written and for the layperson. Below are a series of screenshots of the main pages of the guide. Check it out and let me know what you think.

(Note: Click on the pictures for easier reading)

Home Page

Spinal Bulbar Muscular Atrophy

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Emerson said, "Life is a journey, not a destination."

Learning to live with Kennedy's Disease is my journey. It's not easy ... but its the only game in town.

This journey has no end-state or a final destination where I can say, "I finally made it!" It is, in fact, a long arduous journey of self-discovery.

"Life is a succession of lessons that must be lived to be understood." I have used the analogy that learning to live with Kennedy's Disease is like trying to cross a stream without getting wet. The only way is by using the stepping stones provided (my chosen life's path). Each step is a "life experience" and I must come to terms with that experience (regain my balance) before being able to take the next step. It is a slow and often challenging journey, but I am finding it very fulfilling.

"Nothing comes into experience uninvited." If I am to learn how to live with this disease I must be open (receptive) to both the good and the bad that accompanies these life experiences.

"Acceptance" is what I am working on today. For without it, I will never be able to take the next step.

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Sunday, April 21, 2013

The Genetic Home Reference Library

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