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Anonymous story

May 18, 2021

Huntington's Disease Youth Organization

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My husband and I met at a young age, we were still at school. His Dad was symptomatic with Huntington’s Disease. I didn’t know much about it, but his speech was odd, his face looked different and his walking was unsteady. It was uncomfortable to see him, because I didn’t really know how to be around him. As my (now) husband and I grew closer, I learned that HD is genetically inherited and that this teenager I was falling for was at risk. It didn’t really bother me, so the relationship developed, We married and had children.

I was so conscious about the HD risk to our children and prior to having each one I asked him what he thought about getting tested. He wasn’t ready, which I could accept with no problem, it must be such a difficult, personal choice. So, we have three beautiful children. Our eldest was getting to the point where we wanted to tell her about HD, so my husband went for genetic counselling and was tested. Although I knew it was 50:50, I suppose underneath I am an optimist and I felt deep down he wouldn’t have it. Sadly he tested positive, meaning at some point in the future he will develop symptoms and that each of our children have a 50% chance of having it too. I was numb and heartbroken.


We are adjusting to life with this new knowledge. We’ve made positive decisions around our priorities and how we spend our time. I’d say we are probably closer as a family now.

HD nonetheless occupies a fair bit of my mind. I know at some point I will see my husband deteriorate and I will nurse him for as long as I can. We have difficult conversations to come with the children (they know about HD now, but the younger ones are too young to realise they are at risk). I worry that it might impact their relationships, I feel guilty for the turmoil they may face over whether or not to be tested. I feel guilty that this might complicate their decisions regarding having family of their own. I am saddened to think that they might have it. I might outlive them, I don’t want to outlive them.

I don’t want HD to be in our lives, but it is. But I don’t regret anything. I don’t regret marrying my husband, he is still the person he was before he was tested, the man I love. I don’t regret that my husband was tested, we are now in a better position to teach and support the children. We enjoy each other more now and aren’t saving up a bucket list of dreams to fulfil in our retirement like some people do, we are making a way of pursuing our dreams sooner. And I don’t regret having the children, this world is a better place with them in it.


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