Huntington's Disease

A Negative Test for Huntington’s Disease

HDSA 2019 Convention

Five years ago, in December 2015, John and I visited the HDSA UC Davis HDSA Center of Excellence to start the process to learn John’s gene status for Huntington’s disease.  Mara Sifry-Platt, genetic counselor recorded family history, Dr. Vicki Wheelock physically examined John and a psychiatrist evaluated his mental health.      

John and I had lived with HOPE since 1979, when Lora, Marcia and Cindy, discovered their mother had Huntington’s disease and they each had a 5/50 chance on inheriting the  mutated huntingtin gene.             

Why did John decide to be tested at this time, you ask?  Both of our children, Keith and Vanessa, had become engaged and John felt he owned it to them to know his gene status because it would impact their lives.  HDSA the nonprofit that is fighting Huntington’s disease 

On January 16, 2016, after a six (6) week wait for the results, John and I sat anxiously in a room at UC Davis Center of Excellence holding hands.  We held our breath as Dr. Wheelock gave us the answer we had hoped for.  John was negative!!!!!  It was the happiest day of our lives!

We Can Never Lose HOPE…….

 

 

 

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