Huntington's disease as a family - Sowerby family
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- Опубліковано 27 чер 2024
- As part of HDYO's 'Talking about HD as a family' project, we interviewed the Sowerby family, who shared their experiences of talking about HD in their family. Thank you to Brad, Peter and Pam for taking part. Please consider making a donation to HDYO here: en.hdyo.org/eve/about/587
Such a courageous family!! They are so positive and that should make a difference!
Such a beautiful family ... open and honest when faced with the realisation of HD
Please never hate anyone, never say bad to anyone, never do bad....you never know from outside what he/she is coping inside with 😔
One thing I've noticed when I hear the accounts of people who have parents with a disease that has a 50% transmission rate is that it seems like more often than not they have inherited it. She said she had 6 uncles, 5 of which got the didsorder. This isn't uncommon. So common that I'm beginning to think it is more like 70%. What gives?
I’ve seen the odds swing the other way, so I honestly don’t know. I understand the genetics of how they came up with that number. I carry a defective gene for zellweger spectrum disorder. My husband had exactly the same defective gene. Zellweger is a recessive disease so one would have to get the gene from parents to develop the disease. I have one daughter who has the disease and one daughter who doesn’t but could be a carrier. We had never heard of zellweger until Sarah was born. We didn’t have any more children after that.
Yes, but I cannot forgive people with the gene and willingly having biological children. This is not ok. Adopt or have IVF. Sorry, not sorry.
@@im2cuteferu Madam, how you all doing?
@@bitanmandal977 Doing well, thank you!
Why would anybody thumb down this video???
May God be with you in this time of horror.
May god be with all those with Huntington’s Disease.
Oh wow, 6 uncles with HD.
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5
Yeah, I've seen a lot of videos and it really seems to be greater than 50/50. More like 75/25.
@@taxusbaccata9200 When you look at video’s it does seem that way, to have 6-7 males and only 1 is negative? Then again, each embryo faces the same 50%/50% individually, not as a group of siblings.
🙏🙏🙏
The right age for telling kids has to before they are sexually active. Teenagers often conceal pregnancies
I would disagree with them "often" doing this, but yean
If everyone got tested before having children
we could eradicate this horrid disease.Please don't be selfish.There is a way for a gene positive
person to avoid having a child at risk.IVF ....checking the cells before implantation.
Whoever is asking the questions keep asking same questions just rephrasing.
The husband could've let his wife talk.
She may have asked him too. She didn't seem upset about it.
Yea really, he wasn’t interrupting or anything?
What would Jesus do?
Not have kids..
@@wheatstonebridge Ask God for wisdom and guidance in His Bible and ask Him about your spiritual authority and how to use it. What would Jesus do. Keep talking with God and study Jesus' life and what it was all about. Jesus never turned anyone away from a healing that got in front of Him or even lowered down through a roof. Never give up and never let the dark side convince you certain things are "from God". Jesus bled out for us. Demons know that and don't want us to know what all that entails and gives to us. AUTHORITY.