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Issue 97, June 2007

When HD Came to Tea

My husband tested positive for Huntington's Disease (HD) on 2nd September 2002. This is my account of how I found out about HD, a disease I never thought I would have first hand experience of.

The first time I heard of HD was in university in 1981 where as part of my degree course I studied a module in medical genetics. HD was given as an excellent example of a disorder where the mode of inheritance is simple a 50% chance of inheritance of the dominant gene.

Last minute exam cramming included topics such as chromosomal abnormalities, gene defects, dominant and recessive inheritance, population genetics, ecogenetics, probability of inheritance and role of genetic counsellor. All these topics were well and truly forgotten once the exams were over.

With a degree in my pocket, I started work and also fell in love with a wonderful, intelligent, tall, dark, handsome man. He became my husband in 1987. We bought our dream house, had great holidays and many parties. In 1995 our first child was born, we were both overjoyed.

In early 1997 my brother-in-law phoned us and after chatting about the usual family news, out of the blue he asked me "What do you think of this Huntington's?"

I knew what the disease was but I couldn't figure out why he was asking me about it. He then told me my mother-in-law who had been recently deceased had HD. I felt shock shivers down my spine, my husband and I talked all night about the what ifs. After going through every aspect of HD and its affects we got on with life, and we decided to have a second child.

In June 1999 my brother in law had a diagnostic test which confirmed that he had inherited the HD gene.

Our second child was born in late 1999 another wonderful joy in our lives. But soon fears and worries started to creep back into our lives. After long consideration we visited the National Centre for Medical Genetics in Crumlin. My husband went through the process of having the predictive test for HD.

This involved us talking to the genetic counsellor, the psychiatrist and then having a blood sample taken and tested. The time came to go and find out the result. It was a beautiful sunny day, I was working so I arranged to meet my husband in the waiting room. As we waited for the genetic counsellor to call us, the kids watched Barney, played games on the play-station and made noise with the toys. I scanned other couples' faces and wondered what news they were waiting for. The counsellor walked in and from her face I knew the result. We still had to walk the short distance to her office. "It's bad news" she said… numbness first, then I cried. "Tea" she said "yes" my husband said. Tea was poured and we talked a little. Condense life we were advised and take time to grieve, 'you are both in shock' we were told.

We had lunch, a walk on the beach and drove home. I remember texting close friends and family - 'test did not go our way'. There were lots of tears and hugs for the next hour. But then the children had to be collected, fed washed and put to bed - another normal day.

We tried to get on with life but the pain for both of us was heartbreaking. Luckily we have great friends who showed us great love and support. Our true friends came shining through offering a willing ear whenever we needed it.

We remember fondly getting bottles of wine, flowers, chocolates, mass bouquets and 'Thinking of You' cards all of which helped us on the road ahead.

The first year after getting the positive result was difficult, but strength came in a way we never thought possible. We planned and took a dream holiday and we now make the most of most days.

For the first time in six years we attended the HD AGM in Cuisle, Co. Roscommon. This gave us great encouragement and a new lease of life.

The fun, support, stories, useful information, and therapy will keep us going for another good year hopefully. We know now we are not alone and have a new community of friends to support us.

My thoughts at the moment are, there's no doubt HD is a challenge but it focuses your life. We do the things that are important to us with the people who mean most to us. What is difficult is not knowing what is around the next corner but there is always good in every situation and this learning experience has shown us just that.

For us, going for the test took long and careful consideration but it has allowed us to plan and condense life. We have another big trip planned and our true friends are still here supporting us.

Being able to share our HD story with friends who listen really helped us along the way.

Good luck to all who embark on this arduous journey on a very long and winding road.

Acknowledgement: Hope Annual - June 2006 - Huntington's Disease Association of Ireland

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