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Huntingtons Disease and Me

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This is a story of my family and how H.D. has affected our lives. H.D. has wound its way into our family and has been a rather evil bed fellow to us for as far back as I can personally remember.

Unfortunately my family is one of people that prefer to keep quiet about things rather than keep them in the open and not deal with them fully. This could be because they did not understand fully at the time what was happening to them. I am just grateful that these days there are so many resources available to peopleto be able to deal with things a litle bit easier. Not that I do it often but the fact that I can log on to the internet and there I will find people who can I can identify with is a great comfort.

When trying to trace my family tree back an find the source of our 'curse ' if you like, There seems to be a wall put up and we cannot get any information but in my life time the following people have been affected by H.D.

My mothers' mother (deceased)

My aunt Sandra- my mothers' sister (deceased)

My Aunt Francis-(deceased)

My mother- has H.D.

Me- tested positive for H.D.


My uncle has also passed away but they could not make a diagnosis as in those days in Zimbabwe they did not have testing and the fact that he was retarded made diagnosis difficult.

The scary part is all these women had 7 children in all and the sad fact is each one of these kids has a 50% chance of H.D. afflicting them and some of them actually have no idea of the the affliction that probably runs in their blood. I suppose that might be better in the long run as there is no point in worrying about something that you cannot change.

Why Did I Have The Test?

H.D. has been a part of my life since I can remember. When my mother was diagnosed it wasn't the fact that she was positive that shocked me. More the fact that I was probably going to get it bothered me more. At the time she was diagnosed I went to specialist in Johannesburg to find out the brutal facts on testing and it affected me pretty badly. I lost all interest in life as my opinion was that I could not see the point in anything as I would die young anyway and nothing would make a difference. I looked at life in a reckless fashion not caring what I did or who I hurt in the process. Pretty soon I woke up one morning without a job, a DUI conviction and sitting in a room full of people looking at the 12 steps and all at  24 years of age. I am thankful that someone was looking after me and got back on track after a long rocky road. Each person has their own road to travel I guess. After a year I got restless and decided that it would be best for me to travel and maybe in the back of my  mind was to an escape from reality for a while.

I went to the U.K. and they have a much better support network for H.D. than Zimbabwe would ever have and they had testing facilities. Not that I wanted to  at the time but the choice was there. As it turned out I met a wonderful Australian girl an we got engaged pretty quickly and planned to settle in Australia. Before we left the U.K. I had the test and my reasons are as follows:-

I could not bring children into the world knowing that I might inflict H.D. on my offspring

I was tired of the uncertainty. My whole life was surrounded by "maybe" and I wanted to be free of it once and for all. There was obviously a part of me that expected it to be a negative result as all the physical tests that were done came out a negative, but you can't change it once you know the result. You cant go back.

I wanted to be able to be prepared for what may eventually come rather than be shocked by the symptoms coming on in later life.

I wanted my wife to know what she was taking on when she married me. I did not want her to be in uncertainty either.

Should You Take The Test

I do not profess to be an expert in this area but as a personal observation there are a few guidelines that you should go by. The doctors take you through in intensive evaluation before they will allow you to take the test in any case.

When I first thought about doing the test it was a time of great turmoil. My mother had just been diagnosed with H.D and at round about the same time my partner left me so I can say that my emotional state was not the greatest. If I had done the test   then there probably would have been serious consequences if I came out with a positive result.

My suggestions are only take the test if you are able to deal with a positive result. One thing I did do was have high expections of a negative result as I do not have any symptoms whatsoever( I am 27 years old). In my experience it is easy to pick out people that are highly likely to develop H.D. as I have watched the progresion in family members. When I was going through the testing process I did not want to even think of the probability that I would be positive because in my eyes this would be the negative thing to do. Keep an open mind and you will be able to deal with things a little bit better than I did.

In my mind I had a picture of myself going crazy if I had a positive result but the opposite was the truth. I spilt a  few tears but was relatively calm to the fact that my worst nightmare had come true. I really expected for the world to fall in over my head. I was actually shocked at my calm reaction.

I would not suggest doing the test without support. My fiance was wonderful and gave me all the support that I needed and I am not able to thank her enough for what she has done for me.I would not have been able to do it without her. She has been my strength to deal with all this and she gives me direction in life as we are going to one day have a family hopefully. I still do not believe in inflicting this on someone else but there are ways around it. If you want something bad enough you find a way.

These are just my personal comments and I hope they are of some support and I would appreciate your comments- feel free to e mail me at


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