Stop Huntington's Disease through PGD
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- Опубликовано: 4 сен 2016
- Huntington’s disease (HD) is a fatal neurological genetic disease where each child born to a parent with HD has a 50% chance of inheriting the disease. There is no cure for HD, however, there is an option through Pre-implantation Genetic Diagnosis (PGD) to stop HD passing on to the next generations. However, PGD is currently prohibitively expensive as the Australian Medicare system does not recognise or provide financial assistance to HD families.
Please support Huntington’s Victoria campaign to “Stop HD through PGD” by signing the petition below to let our Government know that as a community we believe access to affordable PGD through our existing Medicare system is a human right for those affected by HD.
www.change.org/p/federal-mini...
Its about dam time they came up with something to help!! My Dad died with HD at 76 my Brother has is really bad. he is 60 and I am 50 now! Lost my niece at 21 in a home! Lost my Dog from a brain tumor. Lost my little cute Guinea Pig that we used to dress up in a little dolls skirt and walk in the parks! Then recently lost my Mom from a severe sepsis infection that spread through her blood stream. Got divorced after 12 years of an mentally and emotionally abusive mirage. I have HD myself...and Type 2 Diabetes, and Nerve and Muscle pain along with bad Arthritis pain every day I move around like I'm 86 and think like an under educated idiot but seem to be smart at all the wrong things that don't really matter. Good luck with your family, and Bless all of you!!
I married a beautiful young lady named Beverly...and to make a long story short...she passed away at the age of 46 from HD. We had 2 children together and I was informed not long ago that my daughter Mariah has the gene............my son shows no signs.....I have no idea where to begin or what to say....when I was informed about my daughter, all I could do is hold her, cry and say i am sorry...here is the difference....I was not told about this disease when I married Beverly, the family didn't even tell me about this disease......knowing it was in the family.........Please if this disease is in your family...........STOP do not have children until you are tested....so they do not have see you die like my children seen their mother die........you want a cure...stop having children.......then it STOPS........my question to the HD community...if you know you are at risk then have the test........before you have children........
Hi Chris,
Thankyou for sharing your family's experience with Huntington's Disease, that sounds like a very challenging position for you, your family and children.
Families unfortunately find out about the presence of Huntington's disease at many different stages of their lives, and it affects them in many different ways. At Huntington's Victoria we try and provide the community with options to make informed choices about their own future and the future of their family's.
Please do not hesitate to reach out to our services if you and your family need any support.
-HV Information Team
I agree. There is no cure and it will be complicated to find a cure. Families need to be honest, stop hiding this. You should not be ashamed of carrying the gene as it was not your fault. But it is your fault if you hide this from your partner. It is also your fault if you selfishly bring children into the world thinking you have years and by the time your children may get Huntingtons there will be a cure. Most likely there will not be a cure in the next thirty or forty years. And it now seems that young adults and even children are getting Huntingtons because when the gene is passed on, it changes and now people are getting it earlier in life. Stop reproducing without either testing the embryos or not carrying to term a fetus with the gene for those who believe abortion is an option. Or adopt. End this now. If this is done, this stops now. Fifty-fifty is way too high a chance. It is a horrible disease and people do not die right away. They can suffer in a nursing home for ten or more years in the later stages.
Thank you.I've been saying that for years...This disease could be eradicated if people at risk would get tested before having children...And
now we have PGD!! We can
stop this horrid disease❤
For those with a genetic link to HD ( and other genetic linked conditions also ) should be able to have ALL IVF and PGD testing with no cost .
I'd rather c s freeinstead of narrative these ppl didn't ask for HD addict chose it
We are pleased to let you know that PGD through IVF is now subsidised by the federal government for those members of the community that are impacted by rare diseases.
Absolutely. But if you are positive do you really want to put your children through the torture and responsibility of watching the disease slowly progress and having to become caretakers for years on end? That's another issue.
My husband has huntingtons n we recently found out our son is now affected w/ the disease as well. My husband was diagnosed when he was 40, he is now 70, and the disease is progressing slowly in him, thank god, we live day to day.
Mam it I'll cure my father have dis disease I HV fear Abt dis disease to me
Thank you for sharing your experience, please do not hesitate to reach out to us if you need any support huntingtonsvic.org.au/contact/. We also have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Prayers. In my family also.
Thank You all so ery Sweetly n my prayers to all of you as well, Sadly M husband lost his battle with HD almost 4 yrs ago now
What a courageous & caring group of people.
Sophie, thank you so much for your support of this family it means a great deal to them.
This is a great film, you are all very brave. I have a brother with a very rare condition. I am learning about PGD but are in UK . Good luck to you all xx
Thank you for your support and I hope you and your brother are receiving the support that you need
Thank God for this new technology
.
but not for Huntington's. Great logic 🙄
Until there is a cure and/or affective treatments, this is the only option that HD families have to stop the defective HD gene passing down to the next generation. Thank you for your support of the HD community.
Wouldn't it be good to put more energy into finding a cure for HD...if PGD is so expensive people in poor countries will still pass on HD.
Hi Theresa, thank you for your contributions. We are now fortunate due to the efforts of the Payne family in this RUclips video, that members of the Huntington's community in Australia can apply for funding that enables them to access PGD. Ultimately, we are all focused on supporting researchers to find effective treatments and eventually a cure.
Had the parents gone through PGD (if it had been possible for them) Natasha would not exist. That is often forgotten in videos like this. In PGD you choose between embryos and not between genes.
Yes but who wants to bring a child into the world knowing they have a 50 per cent chance of inheriting this life limiting terrible disease.It is the only way to get this disease eradicated from the human population.Surely it is the right to do.
@@ireneyoung8696 No, we are not to make that decision. Besides, only the people with HD themselves are able to evaluate whether their life is worth living or would they rather have not been born at all.
@@Johanna040713 who would really want to take that chance.With that view Huntingtons will aways be in families.They know that and so do we.
Thank you for your support and understanding. It is always difficult for families impacted by HD to share their personal experiences with a public that is unknown to them.
Well living 30 years is better than not living at all. But an embryo is such an early stage, it is preimplantation. You would screen it then. You would chose the healthy embryos. And the resultant baby would live a healthy care-free life, not suffer for ten to twenty years dying a horrible death. If you have seen end stage Huntingtons where these people suffer for years, you might be inclined to take measures to prevent this. The other option is not to have children at all in which case Natasha would also not exist. The only responsible thing to do is not to selfishly have children who carry the gene. They can also adopt if they feel it is immoral to screen the embryos. P.S. Tay Sachs has been largely eradicated in the Jewish community because of genetic screening and testing. This is a similar disease, only it happens later in life and takes longer to die.