Do You Really Want To Know?

25Jan15

I watched a documentary tonight called Do You Really Want To Know?  It follows three families with Huntington’s Disease, a rare disease which progressively damages the brain and eventually leads to death.  There are no known cures and limited treatment options.  It is also caused by a genetic mutation.  Since 1993, testing has been available and this documentary focuses primarily on how these three families dealt with choosing to be tested or not.  In the case of Huntington’s Disease, testing positive for the mutation means the person will certainly get the disease if they live long enough.

I heard of Huntington’s when reading up on BrCa even those the two diseases have no relation.  The only common thread is that both are life-altering diseases that people can now choose to be genetically tested for.  However, when I first heard of Huntington’s I couldn’t imagine choosing to get tested for it, even though I certainly chose testing for my family’s BrCa mutation.  But while I can take proactive steps to reduce my risk early in my life with a BrCa mutation, there is no proven strategy one can do to reduce risk for developing Huntington’s.  So why would a person want to know?

Well, this documentary made me reconsider that viewpoint.  Like BrCa, Huntington’s Disease is an active area of research and new treatments are being developed.  There are still many opportunities for scientists to better understand the disease and develop effective treatments if not a a cure.  If a person knows their status, they have the option to participate in these studies.  In a same vein, albeit difficult to broach, knowing your life expectancy is not average gives you the option to plan for life events differently.

I have been spending a lot of time processing my own experiences over the year.  I have a lot more gray hairs than before.  My mother turned gray early too so it’s not truly due to wizened old age, but I do feel I am getting a slight wisp of wisdom.  Mortality hit me hard in this last year.  With three funerals and three lives to reflect over, I have been trying to make sense of it.  It’s humbling to think of each of their lives, what they achieved, how they handled the challenges.  It’s also humbling to realize I have the same fate myself.  But while I used to spend a lot of time pondering over the fate of dying from cancer, I am just pondering over the fate of dying.  What do I want to do now, knowing that my life is getting shorter each day?  Am I doing what I want?  With or without test results, that is question we all have to face.

That said, facing the choice of genetic testing is not an easy path to go through.  Watching this documentary was therapeutic for me as it was the first time I heard people talk about their feelings about testing negative since my own results.  It also talked about testing in the context of a family rather than isolated individuals.  Even though it’s not about BrCa, I would certainly recommend it to other people at risk for BrCa and considering genetic testing.

For those in Canada, the film is free to view on the Knowledge Network right now.

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