HD Australia

Welcom Yumi to the forum, I am sure many people already know about you as I have told them about our friendship over the last few years.   

I hope some people can give you some ideas on how to talk to your daughter and her boyfriend about Huntington's and help you out.   

I am very glad you have joined up, I hope you will find it helpful to be here. Many people have the same problems and can tell you how they found answers helpful.   

Again welcome


Debbie (Buddybird)

Hi Yumi, I am sorry you have a need to be here, but welcome. I hope you find some comfort and support from this forum.

I do believe if they are old enough to be dating, and potentially sexually active, then they are more than old enough to comprehend the consequences of having a family at risk of HD. I do think it is essential you have a talk with her, or encourage her to speak to a genetic counseller. Given she lost her brother to JHD, chatting to a HD counsellor would give her the chance to discuss many of her fears from her past, present and future.

The reality is the boyfriend MAY or MAY NOT decide to escape while he still can - that depends on his nature and whether or not he considers himself capable of handling the challenges ahead. Please don't underestimate what they already know - this generation is very internet savvy and they may well have researched extensivley about HD already and be fully aware of their options for the future. You won't know how much they have disussed these issues until you start talking to them - you might surprise yourself and find that you are worrying about nothing!

There is a good guide available from the internet, and perhaps your local HD Association, called 'Talking to Kids about Huntington's' by Bonnie Hennig. I would do some further research about ways to have a HD-Free family, such as IVF where they impregnate only HD free embryos. This information will give your daughter some hope that regardless of her HD status, she can still have a family of her own and experience the many joys of being a mum.

I wish you strength in having this difficult conversation, and please share with us your journey ahead. Take care, Shy

Welcome to the forum Yumi...its so lovely to see you on here. Debbie has told me alot about you and the very special friendship you share. Im so sorry about the loss of your son to JHD, I can only imagine how scared you must be for your daughters future. I am not in the same situation as you, but I will offer you a few thoughts.

I think its really beautiful that your daughter and her boyfriend are so in love and talking about a future together...your family has been through so much, so to experience a happy relationship must be very wonderful for your daughter. It does sound like now would be a good time to talk about the HD and its risks for your daughter, so they can make informed choices about their future. Like Shy says, you may be suprised by what she already knows. Do you think she would talk to a genetic counselor?

I know when i was 19 i was probably feeling more like hiding from HD, but there are lots of young people who face this head on early in life and plan and prepare their futures, with children and with partners. Access to good information can help alot.  Just because we are at risk of HD doesnt mean we dont have rights to have a happy and healthy relationship with someone. Your daughter, HD or not, deserves to be loved and to share the joys of life. From what you have shared it sounds like your biggest concern is her passing the gene on to her children. She needs to be given the opportunity to make informed choices about this...and to know all her options.

Do you feel she would be open to talking about it?

Ive been doing a fair amount of reading lately and Im working on a website for younger people. Does your daughter like to read? Scotland have a site for their young people, which Im drawing some information from. It has some information about being at risk, and options around children, which your daughter might benifit from reading. She is also more than welcome to join here and ask questions if she felt comfortable.
The information for your daughters age group is http://www.hdscotland.org/youth/pages/young_adult_y18.html
There may be some information which is not relevant given this was made in Scotland. But have a look and maybe you could print some of it out for her.

Take good care Yumi. Its really lovely to have you join us here. I hope it helps a little.
Michelle x

Debbie, Shy, Michelle, Jimmy,

Thank you for your reply and encouragement.
I forgot to tell you a little more something about my daughter last time.
My daughter doesn’t seem to worry about her risk so much.
I think she doesn’t know the detail of HD yet.
That’s why I am worried about her if she will get married in the future.
Jimmy, thank you for telling me about your story.
I thought I have to tell the detail of HD to my daughter before she gets married after I read your story.
Michelle, nice to meet you. Debbie has told me a lot about you.
thank you for telling me about the website for my daughter.
It will help her to think of HD. Unfortunately, my daughter can’t speak English.
I also can’t speak English well. (Debbie helps me to correct my English)
I am going to talk to my daughter about the detail of HD someday.
Will you give me your advice?
What do you think that when it is the best time of telling her the detail?

Yumi

Nice to meet you, sonnie.
Thank you for giving me your advice.  You are smart and have courage.
my ex-husband has HD. He lives with his mother after we divorced.
In Japan, most people who are at risk of HD don't want to decide to get tested.
Because there are very few HD counsellor in Japan.  They can't get any support after test. Australian support is so wonderful!

I will find HD counsellor until my daughter decides to get tested.  
Thank you so much.

Yumi

Hi Yumi - I understand that people in Japan would choose not to get tested if they are at risk of HD. Plenty of Australians choose not to get tested also. I don't think it's because we have lots of HD counsellors here that people decide to get tested - though we do have some genetic counsellors. We also have wonderful support and friendships through this forum, which is very comforting.

I hope you keep posting online and let us know how you are going and about your daughter - I hope all goes well.

sonnie

Thank you everyone for your input for Yumi,

Don't you all agree her English is excellent? I haven't given her much help at all. We met online on a HD website and Yumi flew from Japan to Australia and stayed for 2 days with me and returned home. Like a lot of us HD families as soon as we looked at each other there was that something special between us and we just hugged and hugged for ages.

It has been the same with others I have met online, I have loved them when I met them, cried when they have bad news and excited when they come to visit. It is like we have something special between us with the HD and you can't help but like each other.

I phoned Yumi when I heard her son had died and we just cried on the phone, I didn't meet her son Kochan but my heart broke when I read her email. When I had to phone her it was the same story, I told her about Bailey and we spent the time crying on the phone once again, she had met and played with Bailey while staying here.

We are all like a special non-blood family but understand each other due to the circumstances and we are open to share our experiences. I couldn't think of a better way of meeting people and sharing our lives, Michelle and Nay's families I love without doubt - they are so friendly and kind. Meeting Erica and her family was wonderful at the fundraiser and I am so glad I joined this forum.

So Yumi you are now one of us, I hope you continue to post. Thanks to everyone who made her welcome and shared your stories - you are all fantastic people.

Love

Debbie

Sonnie, thank you so much!
As you told me, I found wonderful support and friendships on this forum too.

Thanks to Everyone! Thank you for welcoming me.
I am really glad I joined this forum.

Debbie, I appreciate your kindness! People in this forum are so wonderful and they give me big courage.
I want to continue to post about my daughter. And I want to share our experiences with you.

I have wonderful news to tell you. I will attend at World Congress on Huntington’s disease this September.
JHDN(our patient society) recommended me today. I was really glad to hear that!
Are there the people attending at a meeting from Australia? If so, I am so happy.

Yumi

Hi Yumi,
Im so glad peoples thoughts have helped you...and yes Debbie Yumi's english is fantastic!

Yumi I am so excited that you may be going to the world congress in September! I am planning to go with another girl, Naomi, from this forum. I really hope to see you there! We will have to meet up somewhere. There are a few other people from Australia going from services and Associations...Its going to be great to meet new people and hear the information to bring back to Australia.
Ive never been to anything like this before...gosh i only went to my first HD conference ever last year...so its very exciting (and a little scary!) to be going to something like this. I hope there is lots of positive information to share. We are all hoping for a cure and better treatments, so people like your daughter can live free of this burden. I want something soon for my brothers who are all gene positive...so im counting on these big research guys...and gals

Love Michelle

Hi Michelle,
I'm so glad to hear that you have plan to attend the world congress! I hope really to see you there too
I've never been to the world congress before. So I am very excited. And I am a little scary too.
Because it's difficult for me to understand English of world congress.  But I'd like to talk to a lot of people there.
I hope we will be able to get positive information, cure or treatments for your brothers.

Love Yumi

Yumi,

I think they will have earphones so you listen to the translation in your own language. I think this is what our Dr said. You might see him there, I will ask him if he is going.

If you meet Michelle and Naomi you will love them lots, they are so friendly and will help you with your English. You will have your own little translator with you and are really fast using that.

I am really pleased you have been chosen to go, where is it? There will be many people from the forums there I am sure - Michelle you might meet up with Eric and those from the other site.

I hope you all get there, please bring back some good news that they can stop this disease soon so your brothers can be saved Michelle, and your daughter can be saved Yumi.

Now I am excited for you all, fingers crossed you can all go and meet.

love

Debbie xxx

Hi Debbie,
The world congress will be held in Vancouver, Canada.  I hope you will attend the meeting too

http://www.worldcongress-hd.net/html/2009/intro?wchdsid=05eaa7d61bc63096f789f126888792c4

Will you tell me your Dr's name?  I look forward to meeting him there.

Love
Yumi

Yeah Deb you should go too! I wish i had a million dollars to send you!
Nay we need to do more fundraising!
It would be so great for you and yumi to see each other again...xx