Testing For Huntington's - Serious Question

[Handyníall]

Hi,

In the early hours of yesterday morning. My mother died of Huntington's aged 41. I have a problem. Huntington's is a genetic disease and as a result, I have a 50-50 chance of having it.

Now I want to be tested for Huntington's, but (and here's the snag), my twin doesn't. Since we share the same DNA then that means that we either both have it or we both don't.

I can't get tested and not let people know the result since they'll worry. But if I get tested and it comes back as positive, then my brother will most likely find out and he'll be living with a ticking clock above his head that he didn't want to know he had.

I don't know what to do.

 

[suzi]

I'd just like to offer my sincere condolences to you, your brother and family, as for the advise you seek, we could all offer suggestions but only you can make the choice, follow your heart and let your mum who i'm sure is watching over you, guide you to the right decision.
Suzi x

 

[red]

I am so so sorry, I think your mum must have been really proud of you two.
i think chocfish has good advice,
take care of yourself and your brother,
and I am thinking of you
love Red

 

[sandymaynard]

Hi
I am so sorry for your loss! i feel for you!
I understand where you are coming from and where your brother is coming from!
Being a twin must be difficult but as choc fish says counselling might help!
I would rather know myself! As then i can make the best of what i have! But i also understand where your twin is coming from!
he is affraid of knowing the truth!
Some people can't cope with knowing something like that!
I am sure that your mum was very proud of her twin son's! All you can do is try and talk maybe talk to a counsellor and ask for help from them!
Sandy

 

[cugila]

Can I offer my sincere condolences to you both, and your family at this sad time.

Ken.

 

[sugarless sue]

Naill and Eoin,my condolences for your loss. You have a difficult road ahead.Deal with your grief and loss first ,then,some way down the road, discuss this problem with a professional counsellor as has been suggested. For your own peace of mind and your future plans one way or the other you need to know so that you can make decisions.
I wish you both well for the future.

 

[mullaneder]

niall and eoin i am really sorry for your loss.you dont have to decide anything now.just be there for each other now and cross that bridge when you come to it.

dermot

 

[hanadr]

I'm sorry you lost your Mum at such a young age.
Huntington's is a cruel thing and being a dominant gene, if you have the gene, you will develop the condition. Whether you decided to be tested or No, you'll have to agree this with your twin. You'll need to think ahead to the next generation too. If either your or your twin, has, or plans to have children. No one can make this decision for you. All I personally can offer is any support you ask for
Hana

 

[Spiral]

Níall and Eoin, I am so sorry for your loss.

I know what a devastating illness Huntington's is, not just the symptoms, but the impact on families and on individuals. I remember when a friend of mine (in his late 50s at the time) had the test, his kids didn't want him to have it because they didn't want to know, he didn't tell them when he went for the test, but were all very relieved when he told them it was clear.

Making a decision now, when your loss is so recent, may not be the best time. But then again, you have watched your mum through her illness, so you have probably been dealing with loss for a while. I don't know how genetics counselling services work where you are, but I can't imagine they'd be a whole lot different to the ones we have here, so I imagine they would go all through the things you have mentioned.

Knowing if you carry the gene will have a huge impact on what you decide to do with your future. But equally, so will not knowing. You could also be clear of the gene but be involved in an accident on the way home from picking up the results. My heart goes out to both of you.

 

[viv1969]

Níall and Eoin, my condolences to you and your family for your loss, and for the stress you must feel over this issue. However, you and your twin may look the same, sound the same, even have the same genetic code, but that is still - mysteriously - no garantee that you would both inherit the Huntington's gene. The university of Michigan is carrying out in depth studies as to why one identical twin may develop an hereditary disease whilst the other may not.
Obviously no-one but the two of you can or should make these decisions for you, but maybe your first port of call should be to a genetic councellor.

Once again I'm so sorry for your loss.

 

[Handyníall]

Yesterday Eoin buckled and we went to the genetics company that we were lab rats for all those years ago (diabetes research when only one of us was diabetic). They tested our genes for Huntington's back in 2005 and we didn't want to know the results until now.

Luckily for us, we do not have the faulty gene, but our older sister does and so does our nephew. Which is a bit of a bummer.

However, we're now not scared of losing our marbles while we're still practicing doctors (that would be a serious hazard!). But a moment of quiet reflection for Huntington's. (Also, we've changed our sponsorship for the London Marathon, half the money's going to a hospice in Ireland, and half to Huntington's Research).

Anyway, just thought I'd update you. And thanks for the kind words, our mother had made her peace with God before she died and that's the one consoling fact really.

 

[copepod]

Hi Niall and Eoin
Huntingdon's makes diabetes seem easy to cope with, doesn't it? I really don't know what to say to your sister and nephew, but I hope they make the best of their lives before symptoms begin. Hope your medical careers are successful to you and your patients, too. Run well next April!

 

[hanadr]

Hi twins
You must be so relieved to be clear of the Huntington's gene. all you can do for your sister and nephew is to love them, whatever happens. And pray that the gene delays its expression
Hana

 

[Spiral]

I am so pleased to hear that you have not inherrited the HD gene, but I know from working with families where there is a serious inhertited illness that those who have not inherrited it still live with its impact. Illnesses like HD don't just affect the individual with the gene, they affect whole families. I am so sorry to hear about your sister and nephew. Look after yourselves.