HDYO believes talking to children about HD as a family is important and helps them to cope.
So we interviewed five families in England who are affected by HD, to get the views of both parents and children on talking about HD openly.
Talking to children about HD isn’t easy…
Gil: The thought of telling our children about HD, very difficult I thought.
Lesley: Felt really guilty.
Ben: We were obviously a bit nervous about how the kids were going to feel
about it all after finding out.
David: Obviously one of the big things you feel is guilt, you know it’s an irrational thing,
we didn’t know that HD was in the family beforehand,
and now suddenly I’ve put my daughter at risk, you feel guilty,
you shouldn’t because there’s nothing you can do about it.
…but children appreciate being told about HD.
Felicity: I was glad I was told cause otherwise it’s just like a secret,
I don’t want someone hiding something from me that could happen to me when I’m older.
Charlotte: I am glad I was told about HD, it was easier seeing my mum
get ill knowing the reason why she was getting the way she was.
Liam: I was glad and still am glad that I was told about H.D in the family
if there’s H.D in the family it has to be discussed, at some point
if it’s just brushed under the rug then it just creates a lot of problems.
Sian: Yeah, cause if we weren’t told about it then,
we were suddenly pushed into it, it would
kind of feel like they kept something from us for so long that it wouldn’t have been right.
Brad: I don’t think that it should be kept a secret, I think the more open the person telling someone that they’re at risk of having
it, it’s just better because if they actually do find out about it, the
thought process of them, like having it in their mind,
you’d be like, why didn’t my parents tell me?
Continued discussion is important.
David: We talk about HD as a family regularly, we’re open about it,
If somebody wants to have a chat about something, or have found out something, we just talk about it.
Pete: Every time we’ve been to our consultant and
we’ve got the latest news, we’ve always fed it back to Mark and Brad,
as to what the latest situation is with that.
Charlotte: We talk about HD quite a lot, after mum goes to hospital appointments.
David: We talk about it, when we try and find out more about it,
what we do find out we talk about, don’t we?
Charlotte: Yeah
Ben: Sometimes you come out with a question out of the blue about Huntington’s don’t you?
Ellie: When we’re talking about something that has nothing to do with it,
I normally ask a question.
Ben: Exactly, and the book from the HDA, the little yellow book was very helpful, we got hold of that.
Flo: Huntington’s is a disease where it affects your brain and
your brain is a bit like a computer and your brain sends messages
to around your body and it doesn’t work properly if you’ve got Huntington’s disease.
Ben: And I think that’s word for word actually out of the book.
Being open helps families…
David: Being open about HD as a family has helped us handle everything.
Charlotte: Being open about HD has really helped.
David: Not just with us, being open about it with other people,
you know who your friends are then, they’re either staying with you
or they go away, don’t they?
Charlotte: Yeah
Felicity: Being open about it you can ask questions and
like you would tell me straight, you would tell me what I wanted to know,
you wouldn’t lie about anything, I don’t see the point in lying.
Charlotte: Being open about it had helps as well because we get
people asking us questions in the high street and it’s nice that we
don’t have to shy away from it, because we know the majority of the answers.
Ben: When you go to the branch meetings now and you see people with Huntington’s do you still feel scared or not?
Ellie and Flo: No
Ellie: Because we’ve gotten used to it and we’ve seen it before
and we’ve kind of learnt more about why they are doing it and what’s happening.
Pete: Being open about HD has been very beneficial to this family,
it’s just kept everything open for discussion, open for questions,
no secrets so you don’t have to be on your guard all the time.
Brad: It’s a lot better with mine and Mark’s social life as well,
you want to tell them what it is so they know and they can appreciate it.
Lesley: It’s helped me as I’ve progressed through it,
knowing that my family know about it, so I’m not hiding anything,
if I’m having a bad day or a bad time they’re more understanding
Liam: Being open as a family about H.D has really helped,
especially in terms of the emotions that you feel and that you go
through when you talk about it, you need the family support around you for that.
Sian: Also finding out, especially from your family that there
are more people out there who have it and seeing that it’s really nice to know you’re not alone.
Pam: To me it’s a negative thing to not tell your kids.
Pete: Something that important, that’s possibly going to affect them in later life.
Gil: I can’t really see how you can’t tell your kids, they need to know.
HDYO would like to thank the families that made this video possible.