Showing posts from June, 2017

To test or not to test? The gamble...

Many people unfamiliar with HD wonder why anyone wouldn't want to know about their genetic status.  Surely people want to avoid passing the gene on.  Surely you'd want to be able to make plans.  But the reality is that finding out - without a doubt - that you will develop the "cruelest disease known to man" is not an easy decision.

The decision to test our son, Lacy, was made when we began to realize that the changes in his personality and health HAD to be Huntington's Disease.  We had known when we adopted him that HD ran in his family - his maternal grandmother had the disease - but we put this knowledge to the back of our minds and we worked to support Lacy in being the best he could be in all areas.  We were advised not to seek testing when he was young, and this was a great advice.  The specter of HD would have clouded everything we did, and every push to help him rise to his best self.
However, ours is not a typical story.   Alys, Lesia, and Drew hav…

Drew - Hoping for a cure

The importance of search for possible treatments or a cure for Huntingtion's Disease is the one ray of hope for the hopelessness of HD.  Because the gene mutation has been identified, and we know what happens in the brain of a person who has this gene mutation,  a cure is theoretically possible.

------- Drew Earls is a young husband and father who lives with the knowledge that he has the HD genetic mutation.  Although HD ran in his family, it wasn't until he was a young teen that he was made aware of that genetic history.  His maternal grandmother was diagnosed shortly after the genetic test became available in the mid 1990s.   
"Everyone thought she was crazy,” Drew recalls.  "My grandmother was an angry, bitter person, and my mom did not have a good relationship with her."  Because of their estrangement,  his mother did not find out about the diagnosis until well after her mother had been tested.  
Drew didn't see his grandmother much, but he believes that…

Living with HD - Alys

Living with HD - Lesia's Story

In the next series of posts, I'll be telling the story of three people who live with, or are at risk for, Huntington's Disease.   ---------
An HD diagnosis affects multiple generations.Each child of an affected parent has a 50/50 chance of inheriting HD.Those who test positive for the defective gene will develop Huntington’s Disease and some families lose whole generations.
Our family has received support from the international HD community.We’ve attended the Huntington’s Disease Society of America yearly conference where HD families connect with others around the world. We’ve also joined the Facebook page Huntington’s Disease Support – The Good, The Bad, and The Ugly.Through these services, we have met Lesia Fry, Alys Bloch, and Drew Earls (psuedonyms).These friends have shared their own journey as their respective families deal with Huntington’s Disease, and have agreed to allow me to write about their experiences.
Lesia spent years trying to get help for her mother. “We …