I'm 50% at-risk but don't want to be tested. My partner and I would like children but are undecided about which path to follow: not testing either the foetus or myself; or pre-natal exclusion testing.

Has anyone out there who's had to make a similar decision (or is going through the process) got any comment or thoughts to share?

Samara

When my wife found out she was 25% at risk we decided not to have children. I should explain, at the time there were no tests available (late eighties/early nineties).

We are all optimistic about advances in treatment, and there are exciting trials going on at present, but the bottom line is there is no established treatment for H.D. at present.

We decided that the disease may have got my wife but we weren't going to be responsible for anyone else having to live with the risk. To us this was a small victory over this disease where there has been so little hope.

For the population at large, exclusion testing means the discarding of healthy embryos in half the cases. It is your personal choice whether you can reconcile yourselves to that, it isn't up to anyone else. (I take it you are aware of Preimplantation Genetic Diagnosis?)

On a positive not my father in law tested negative once the test became available, so we now have a beautiful daughter, for whom we are very grateful.

Good luck

I am 26 y/o and my mother has HD (I'm also 50% at risk). I decided to go through with the testing - it was a very tough decision. The testing is usually 3 phase - so you can go through the initial stages, and then back out if you change your mind. I also have been contemplating having children - this was one of my motivating factors. I would be happy to share what I experienced and my thoughts with you - I definetly can identify with what you are going through. There really is no right/wrong decision, you have to go with what is in your heart and why you want to know, and what you will do with the information once you find out. Even though they can tell you if you test positive or negative for the gene - they can't tell you when the onset of symptoms will occur. So, it's like having the knowledge looming over you - "one day I'll get this", well honestly you might get hit by a bus tomorrow -you never know.

I am also 50% risk and my husband I decided to go through the same as you.
I started testing about 6 years ago, but I felt th staff were inhumane and not supportive of my situation. My mother, grandfather and uncle all have died from this disease, and now my uncle and brother are falling prey to this disease.

My husband I decided to take one day at a time and not find out for sure if I have it. Since this disease has already taken over so much of my life with all my family,
I am enjoying the simple pleasures as long as I can and God willing. What else can we do?

We are working on making an appointment in Maryland, hoping to be pregnant by this summer.

If my husband was so supportive and a great person, I would never beable to go through this. I know my husband would have no problem raising the kids without me. You really need someone to be there for you.

Good luck to you, and I will say a prayer for you and your family. Let me know how things go for you.

Heather

I can relate in many ways to your story. My father tested positive 4 years ago. I am 31 years old (married just 2 years) and have not been tested - I choose not to get tested at this time. So does my brother who is 28 and about to be married. My husband and I have decided to go ahead and have a child in a couple of years' time. You could get hit by a bus tomorrow, get breast cancer when you are 40 so why find out that you are going to get something and not know exactly when the symptoms will begin and get worse. Sometimes I feel guilty that we are going to go ahead and have a child regardless because so many people's stories I have read are different to ours. But you only have 1 life and I am going to make the most of it. My husband is very supportive. Who knows, perhaps at the time when we will plan for the child, I may well be tested then, or have the foetus tested for the disease. Feel free to email me to chat. I'm writing from Sydney, Australia.

I'm a mother of 2 boys who have HD they are 13 and 11 their father (my Ex) has HD and it runs in his family. (his mother, brother, grandfather) that I know of. He did not tell me this until I exprecting our youngest, this was when I met his family. They told me not to worry for there was only a 50/50 chance and they boys would be fine. HAHA. they now have siezures which are not controlable, they can not walk, talk, or care for themselves. The youngest is tube feed for he can no longer swollow without choking. All I can say to all of you is do you want to put your child through what mine are going through for it is not right for them to suffer.for you wanting a child . ADOPT. Stop this terrible disease now.

Lois

I couldn't agree more with you.

It's all very well closing one's eye's to the problem and assuming that there will be a cure before one's children could develop the disease, but this is the attitude 'it can't happen to me'. Your situation is living proof that it can.

We were lucky in many ways, not least because we knew my wife was at risk before we wanted to start a family. It is not easy to take the decision not to have children - and many people will say it's a suppression of freedom. Well, with freedom comes responsibility and every parent should do the best they can for their children. My wife and I lived with our decision for some years and it wasn't easy, but our sacrifice meant that a new life would not suffer.

Tough decision - but make the right choice.

Good luck to you Lois.

Best

Chris

Dear Lois,

My sincerest prayers and deepest thoughts are with your family. Tears in my eyes remind me daily of the torment of this hideous disease. Living with a child, much less two children suffering from this is torment. If there is anything I can do or supply you with...please email me anytime... God be with you always... (Sunshine Cindy)