Thankful

John’s Genetic Test for Huntington’s Disease

In late November, 2015, John shared with our children and their spouses, that he was going to have the genetic test for Huntington’s disease (HD) after living for 37 years AT-RISK.   He felt he owed it to his children.  We made an appointment at the UC Davis Center of Excellence in Sacramento and spoke Dr. Vicki Wheelock and Mara Sifry-Platt, genetic counselor.    HOPE was more important to me now than it had even been.

We had to wait six weeks to find out John’s test result and I was thankful it was during the Christmas Holiday which was busy and festive, and kept my mind occupied.  It was when I was lying in bed trying to go to sleep that my mind would not be still.   Click here to watch a video on Mara talking about predictive testing.                                                                 

On January 8th, 2016, John and I held hands as we waited in the patient room.  When Dr. Wheelock entered and sat down, my heart was beating so fast I felt dizzy.  I could tell John was nervous, squeezing my hand and taking deep breathes.  Mara, was also in the room as Dr. Wheelock asked if we wanted to hear the result.  I looked at John, and he nodded.  

Dr. Wheelock shared the result which was negative.  My shoulders dropped and my hand covered my mouth.  I have not seen John cry more than two times during our life together, and this was the third time!  We are so grateful and blessed and now our children do not live in the shadow of HD.

Locations in the San Francisco Bay Area Locations that test for HD.  Kaiser Permanente San Jose  

Stanford Center of Excellence and UCSF Center of Excellence

We Can Never Lose HOPE…

 

 

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