Living with Huntington's disease in our family: Jacqui's story
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- เผยแพร่เมื่อ 28 ก.ค. 2020
- Jacqui tells the story of her family's battle with Huntington's disease and the uncertainty and fear she experienced knowing she might have inherited the gene that causes it.
Our heartfelt thanks go to Jacqui and her family for sharing their story
I'm so glad she doesn't have it but I'm so sorry that her mom has it.
And the worst part is if she has children they will get Huntington’s
Thank you for your understanding and support. It is much appreciated by the family and please do not hesitate to reach out if you have any questions huntingtonsvic.org.au/contact/.
@@koreywitabagg66550% chance
HD is just horrific, very happy for her that she doesn't have it, but I can't imagine watching my Mom go through it.
Thank you for your understanding and support on behalf of the family. Please do not hesitate to reach out if you have any questions huntingtonsvic.org.au/contact/. We also have a peer forum that is a safe space for you to connect with others who have similar experiences and share stories with each other, head to this link if you would like to register huntingtonsaustralia.com.au/registration/
Stops with her...takes a very Brave person to make that happen
Wow great to hear some meds helping 👏👏♥️
May Jacqui’s cousin and may god be with all those with Huntington’s Disease.
Thank you on behalf of the family.
My mom had this. I am in the gray area, so I may or may not develop symptoms. Hopefully a cure will come soon!
Hi B, thank you for reaching out and letting us know of your personal connection to HD. Please let us know if you'd like to be included in our mailing list so that you can be across what is happening in the HD community and the research space.
This is what you need to know. I know of a family where the daughter and mother were positive. But the daughter had invitro analysis of her embryos and the positive ones were eliminated. She went on to have twins with the non-positive embryos so the family knew that the disease would not be passed on in the next generation in their family. This is wonderful news. BUT, this process is illegal now in many states and thus not available to many people. Fight for reproductive freedom and allow families and their doctors to make the best decisions.
Hi Susan, thank you for sharing a story of the family of a mother and daughter who were living with a positive status. I hope they are both well and please do not hesitate to let them know that we are happy to be of any assistance if they need it, you can find our contact details here huntingtonsvic.org.au/contact/. With respect to reproductive rights, there is now funding assistance in relation to PGD.
It is genetic in my moms side of the family. Im due a test. My moms side of the family are a walking medical disaster. Epilepsy, brain hemorrhages and huntington's disease. How can one family have so much bad luck.
Hi Andrew, thank you for sharing your family's experiences with HD. We truly empathise with the challenges you and your family are facing. HD alone can be very overwhelming, please know that you're not alone in your journey. You may find some comfort in reading through or asking any questions in the Huntington's Community Connect forum huntingtonsaustralia.com.au/. It is your safe space in the HD community. If you need any assistance, feel free to reach out. We are here to help.
Best wishes 🙏🙏
Thank you on behalf of the family.
Beautiful testimony. My Grandfather, mother and two aunties also have this disease. Can you tell me how many CAG repeats your mother has as I believe the amount can show a real variance between how servers one has it.
@Pablo Dc is pablo a billionaire yet? If not keep your cure LOSER!!
We know the family is pleased that their experience had relevance to you. This is a family that choses to live life to the fullest in spite of HD and its impacts.
I have a question, even though she does not have HD, wouldn’t she still have a recessive gene for it? Meaning it could still show up down the line. Does anybody know?
Hi Diana, thank you for your question. The mutated HTT gene that causes symptoms is a dominant gene. This means if you do not inherit the gene from your parent, you will never get HD symptoms nor pass it down generations. Please take a look here to read more huntingtonsvic.org.au/genetics/, hope this helps!
@@huntingtonsvictoria3391 Thank you !
traumatic HD , memory loss, probability of 0.5 , looking to mirror , Jeanne negative,
Please do not hesitate to reach out if you need to at huntingtonsvic.org.au/contact/.