General Chat

He is now almost thirteen.I have had him about 20 months now.Still have a social worker in touch about every 6 weeks.After he was diagnosed adhd he went onto concerto xl.He has regular health checks and has grown so much.He is now a number 9 shoe lol.Although his other grandad has got Huntingdons and he has probabaly also got this horrible disease he remains to be very happy.He never ever mentions his mum who never ever phones or has any contact but he now has regular contact with his mums sister who has him over night one day a week.He loves that as she spoils him. Annie

Grannie, can they do tests to tell if he has Huntingdons? Maybe it wasn't passed down to him. Did/does his father have it? Poor lad if he has.

hi im sorry to be rude and butt in but are you talking about huntingtons korea think thats how you spell it

Ann,Its his mums dad that has it.His aunt and his mother is going for the test.Grandson too young.Even so at this mo dont want him to have it as its a death sentence.Told by his aunt today if his mum does not have it then he does not.My mum says it can skip a generation. Annie

Bluebelle,Yes,do you know anything about it? Annie

yes it is in our family mothers father had it a few of his children got it but not all have the disease i went for tests to see if i had wiil help if can what would you like to know

Just looked it up Grannie and it doesn't say it can skip a generation. it says:


Each person whose parent has Huntington's disease is born with a 50-50 chance of inheriting the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the disease. A genetic test is available from Regional Genetic Clinics throughout the country. This test will usually be able to show whether someone has inherited the faulty gene, but it will not indicate the age at which they will develop the disease.

So even if his Mum does have it there is still a 50-50 chance that he doesn't.

Ann
glos

Hi Annie, maybe his aunt wants to lessen his worries. If you google Huntingdon's Chorea and maybe download some simple information, if he ever worries about it you can show him the info. and let him be tested.
The longer he can go without worrying tho the better, he sounds as tho he is coping well.

How did your daughter get on with the deposit refund, any luck yet?

Lizxx

As one of my family lines have this ilness i can tell you that your grandson only has a 25% chance of having HD, and if his parent (the child of his grandfather) has a positive result then the boy has a 50% chance of inheriting so you cant really say he probably has it ....there is just as much chance that he does not. Also it does not skip a generation so if his parent does not get it then he will be ok.

hi we have hunntingtons in our family my grandfather had it you can go for testing i did you get a blood test done then you get various tests for memory , balance you then get councelling then you get your results you can ask for this at your doctors who will reffer you to nearest hospital to have this done

What are the symptons of Huntingtons Disease please!

from what i have seen it is gradual your walking becomes affected you loose memory of things till you end up in a wheelchair unable to do anything for yourself we were told its like you are 45 on the outside but 95 on the inside and then you die there is no cure my grandad had it four of his children have also died of the disease

I don't know what to say Annie, just that he is very lucky to have you.
No matter what the fuiture may hold for him, you will love him. Bless you.(X)

AND life can be such a BITCH sometimes.
Deanna X

Hi, I have just noticed a fair few threads relating to Huntington's Disease on here and wanted to reply to Blackrose and others who have mentioned symptoms and how HD is passed on.
Just a quick explaination, HD has been in my life for as long as I remember. As a child, I saw my Grandmother become very ill and eventually pass away. I lost my father this year in July. Unfortunately, my only sibling, all of my at risk cousins and my aunt have also tested positive.
Huntington's Disease unfortunately does rob the sufferer of everything we take for granted over a number of years, sometimes as long as 20. The most noticeable symptom being the jerky uncontrolable movements, known as "chorea", the Greek word for dance. HD also affects the patient mentally, causing difficulties in caring for someone affected. As the disease progresses, patients normally lose the ability to walk, talk and reason.
Symptoms can vary from person to person, for example, my aunt is much more palcid than my father could be, as he suffered with denial for several years.
HD can apparently sort of skip a generation, this relates to the CAG count. If a person who tests has a CAG count of 27-35, it is intermediate and although they are not going to develop the disease themselves, it has been documented that they could pass the diesase onto subsequent generations. If anyone is at risk and thinking of testing, it's probably a good idea to ask for your CAG.
I'm really sorry that it's also in some of your families and I hope I haven't upset anyone with this post, I just wanted to answer one or two things that have been mentioned as anyone with HD in the family will know, it is such a "secret" disease and getting more people to know about it is such a good thing.

Kind regards,

Tasha.