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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 25-11-16, 11:21 PM   #1
TrekkieGal
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Join Date: Aug 2016
Location: Scotland
Posts: 1
Default PGD without genetic testing

Hi everyone, I'm new to the forum and was wondering if you could please help me. My mum was diagnosed with HD in 2014 when she was 66. It was a huge shock, as we have no known family history of the illness. I was 28 at the time, and my sister 31. Fast forward to 2016, my sister bravely got tested in March and doesn't have the gene. She's now expecting her first baby. My husband and I think we would like children, but I'm terrified of living with a positive test result. Some days I think I could cope, but other times I really don't think it's for me. We're thinking of doing PGD without me being tested (think it's called non-profit exclusion testing, where they only look at my parents' chromosomes). We went to our local PGD clinic last year to discuss our options and were very impressed with them. But I know IVF is stressful at the best of times, let alone PGD. Especially if I might not need to be doing it. Or I might! Has anyone else taken this path or have considered it? If so, how did you find it? I live in Scotland and get good support from the SHA, but feel so alone as I don't know anyone up here in my situation too talk to. Thanks, any help welcome! Xx
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Old 14-12-16, 12:15 AM   #2
Jharr
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Join Date: Mar 2015
Posts: 11
Default Re: PGD without genetic testing

Hi, I have just completed IVF with PGD. My partner is at risk of inheriting the gene but also doesn't want to know at this point. We, therefore did the exclusion testing like you would have. Now looking back I think how difficult going through it must seem to an outsider, however, at the time you have one goal and it's such a important one that it outweighs all the difficult parts. I won't lie it was like a roller coaster but I now have a beautiful son. I would do it all again in a heartbeat. We were given 3 attempts on the NHS and luckily for us we were successful first time. However, we will have to find the money for a second child, which I really want to do. I did fall pregnant naturally before the IVF. We had a cvs test done, in the same way so that we wouldn't find out if my partner had the gene. Unfortunately the pregnancy was high risk and we decided to end it. This was so hard for me.
I am happy to give more information if you like.
X
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Old 01-01-17, 07:08 PM   #3
Clear&Bright
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Join Date: Jul 2014
Location: West Midlands, UK
Posts: 24
Default Re: PGD without genetic testing

Quote:
Originally Posted by TrekkieGal View Post
Hi everyone, I'm new to the forum and was wondering if you could please help me. My mum was diagnosed with HD in 2014 when she was 66. It was a huge shock, as we have no known family history of the illness. I was 28 at the time, and my sister 31. Fast forward to 2016, my sister bravely got tested in March and doesn't have the gene. She's now expecting her first baby. My husband and I think we would like children, but I'm terrified of living with a positive test result. Some days I think I could cope, but other times I really don't think it's for me. We're thinking of doing PGD without me being tested (think it's called non-profit exclusion testing, where they only look at my parents' chromosomes). We went to our local PGD clinic last year to discuss our options and were very impressed with them. But I know IVF is stressful at the best of times, let alone PGD. Especially if I might not need to be doing it. Or I might! Has anyone else taken this path or have considered it? If so, how did you find it? I live in Scotland and get good support from the SHA, but feel so alone as I don't know anyone up here in my situation too talk to. Thanks, any help welcome! Xx

Hi,

I am going through the same thing, although the slight difference with me is that my dad (HD on his side) passed away from a heart attack without ever knowing if he had the disease. I saw a genetic counsellor as we are at the point where we wanted to start a family, however I was (still am) petrified about passing the disease on. I was advised that as my dad has passed away, exclusion PGD would not be possible as they do not have any of his genes. My counsellor was great, and talked through everything clearly but I didn't have a light bulb moment. the only way for me to know for certain is to be tested myself before we start tying for a family.

Whatever you decide needs to be your decision about what is best for your and your partner

Claire x
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Old 11-06-17, 09:23 AM   #4
Clive
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Join Date: Jun 2017
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Default Re: PGD without genetic testing

Claire - I am really surprised that your counselor said that given your father's passing and hence not having his blood you cannot undergo exclusion testing for HD. That is simply not true as my wife and I worked through the same issue. As long as the genetics lab has your blood your husband's blood and your mom's blood that is all they need - there may just be a little bit of a delay in setting up the genetic probe (the unique key used to test the exclusion). When testing the embryo they will see your and your husband's genetic material as well as your mom's. Then they will see someone else's (your dad's) but they will just stay away from it - this is a very rough interpretation.

We have gone through 12 IVF cycles using an exclusion PGD test (my wife doesn't want to know) over 4 years. Never gave up even though doctor's would discourage us to continue. Went to three different clinics. Our perfectly healthy son was born last month being 99.9% free of HD.

I will be writing a blog about our experience as we amassed Sony hack information but bottom line is that never taking anything at face value and always corroborate the information. We were shocked to hear so many inaccurate or wrong information from doctors. Never give up Claire!


Quote:
Originally Posted by Clear&Bright View Post
Hi,

I am going through the same thing, although the slight difference with me is that my dad (HD on his side) passed away from a heart attack without ever knowing if he had the disease. I saw a genetic counsellor as we are at the point where we wanted to start a family, however I was (still am) petrified about passing the disease on. I was advised that as my dad has passed away, exclusion PGD would not be possible as they do not have any of his genes. My counsellor was great, and talked through everything clearly but I didn't have a light bulb moment. the only way for me to know for certain is to be tested myself before we start tying for a family.

Whatever you decide needs to be your decision about what is best for your and your partner

Claire x
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Old 27-06-17, 07:36 AM   #5
Clear&Bright
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Join Date: Jul 2014
Location: West Midlands, UK
Posts: 24
Default Re: PGD without genetic testing

Quote:
Originally Posted by Clive View Post
Claire - I am really surprised that your counselor said that given your father's passing and hence not having his blood you cannot undergo exclusion testing for HD. That is simply not true as my wife and I worked through the same issue. As long as the genetics lab has your blood your husband's blood and your mom's blood that is all they need - there may just be a little bit of a delay in setting up the genetic probe (the unique key used to test the exclusion). When testing the embryo they will see your and your husband's genetic material as well as your mom's. Then they will see someone else's (your dad's) but they will just stay away from it - this is a very rough interpretation.

We have gone through 12 IVF cycles using an exclusion PGD test (my wife doesn't want to know) over 4 years. Never gave up even though doctor's would discourage us to continue. Went to three different clinics. Our perfectly healthy son was born last month being 99.9% free of HD.

I will be writing a blog about our experience as we amassed Sony hack information but bottom line is that never taking anything at face value and always corroborate the information. We were shocked to hear so many inaccurate or wrong information from doctors. Never give up Claire!

Thank you so much for your response. This is positive for me to hear, I will get back in touch with my genetic counsellor to see if we can discuss this in more detail. Congratulations on the birth of your son, what wonderful news xxx
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