Notifications
Clear all

Genetic Testing Hi everyone

7 Posts
3 Users
3 Reactions
145 Views
LauraC
(@laurac)
Posts: 3
Active Member
Topic starter
 

Hello everyone

My name is Laura I'm 39 years old.

Huntingtons is in my husbands side of the family. My mother-in law passed away 5 years ago from it so we've seen how it affects someone. I had never heard of it until i met my husband so im still learning so much about it.

He has not yet tested for huntingtons but he is now considering it, just for piece of mind. I already posted about testing sites in Geelong so if anyone knows please let me know. 

Something else I'd like to ask is what things did you do to prepare for getting tested? Whether youre in a similar position to me being a partner of someone with HD, or have gone through testing yourself?

Thank you for any help in advanced!

Laura

 
Posted : 05/10/2023 1:41 pm
Sue B
(@sue-b)
Posts: 38
Member
 

Hi Laura,

Welcome to this forum. Please remember that you are not alone and I discovered that no question is a dumb question.

I had never heard of this disease until I meant my friend.  I supported my friend from the time she decided to get tested in 1998 until she passed away nearly 2 years ago. I would definitely encourage having genetic counselling prior to getting tested. I went with my friend during the counselling sessions. The counsellor was able to explain more about the gene testing and what it meant. They also talked about the physiological, environmental, spiritual aspects that the person can focus on and the sessions went over approx 6 weeks prior to getting the results. Huntington's Victoria has lots of resources and would be able to recommend where to get tested as well.

Take care x

 
Posted : 18/10/2023 8:04 pm
jenclark reacted
LauraC
(@laurac)
Posts: 3
Active Member
Topic starter
 

Hey Sue, thank so much for sharing and for your advice. I feel like i have soo many questions but youre right, they cant really be dumb in this space i guess 😋 so much to learn 

Sorry to hear about your friend passing that would have been tough for you. I think I've found some genetic counselling clinics we can visit in geelong, hopefully hubby is open to it. 

Thanks again, 

Laura

 
Posted : 24/10/2023 4:59 pm
Sue B
(@sue-b)
Posts: 38
Member
 

@laurac 

Hi Laura,

Check out the Huntington's Victoria website. Under Huntington's Disease click on Predictive testing. This might help your husband in making a decision to get tested or not. We are here for you if ever you need assistance. Take care Sue

 
Posted : 28/10/2023 8:30 pm
jenclark
(@jenclark)
Posts: 2
New Member
 

Hi Laura and Sue. How did you decide which genetic councellor to see? are they all the same?

And im still learning too Laura, it's kind of comforting to hear that not everyone knows what they are doing! 

Thanks Smile

 
Posted : 20/12/2023 11:34 am
Sue B
(@sue-b)
Posts: 38
Member
 

@jenclark Hi Jen, welcome to this forum.

My friend went to see a genetic counsellor at the Victorian Clinic Genetic services which is based at the Royal Children's Hospital. She was referred there by a doctor. I went with her each week for her counselling sessions (I think it was about 6 sessions). From memory, they had done the blood test on the first session, then each week they discussed different aspects, such as explaining what the Cag meant, physically, spiritual, environmental etc. On the last session she received her results. (She could have also decided not to receive them at that time as well). 

I would also suggest that you make contact with Huntington's Victoria to get any further information as well.

I hope this helps. Please feel free to ask any questions/express any concerns you may have at anytime.

Take care Sue 

 
Posted : 27/12/2023 5:10 pm
Carly Jevric reacted
Sue B
(@sue-b)
Posts: 38
Member
 

Hi Jen,

I also recommend that you check out the Huntington's Victoria website. On their front page under the header Huntington's Disease the have information including fact sheets   regarding predictive testing. I hope this helps.

 
Posted : 27/12/2023 7:26 pm
Carly Jevric reacted

Upcoming Events

Share:

HCC is not a crisis service so if you require immediate support and/or feel in danger or unsafe, we recommend that you please contact 000 or one of the following crisis support services.