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Jess25

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  • "Jess25" started this thread

Posts: 9

Reg: Jun 29th 2014

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Thursday, July 3rd 2014, 8:58pm

Info wanted on pgd

Hi everyone, I am a carrier of muscular dystrophy due to my dad having the disease although I am not affected by symptoms. My partner and I have been referred to genetic counselling as I have a 50% chance of passing this on if I had a boy. We have researched a little on the internet about pgd but would love to hear success stories from women who have been through it and would like to know the chances of having a child through pgd. Very very new to all this so finding things a bit overwhelming sometimes!

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Thursday, July 3rd 2014, 11:31pm

Hi Jess,

Our family is a success story! We have two lovely daughters through PGD. Similary to you there is a single gene mutation in our family giving 50 % chance to pass it on. We were told the chances for success are around 20% per cycle and 50% after 3 cycles. PGD was great for us as we would not have wanted to terminate any pregnancy but still hoped to avoid passing the condition on.

Have you been to the counselling yet? We found it great and very helpful altough by the time we got there we were quite sure we wanted PGD (other choices offered were remaining childless, sperm donation, natural pregnancy + prenatal screening, adoption).

I found this blog very helpful too of a lady with Myotonic dystrophy: A PGD blog - she always replies e-mails :-)

Any questions just ask.

xx Rianon

Jess25

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  • "Jess25" started this thread

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Friday, July 4th 2014, 7:11am

Thanks so much for your reply. It's great to hear success stories! I haven't had the counselling yet am still waiting for appointment to come through for that but we have pretty much decided pgd is the route we want to take however I'm just a bit worried about our chances of actually having a child this way but I guess the risk is going through all that to still be unsuccessful so it's really good to hear your stories :)

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Saturday, July 5th 2014, 12:14pm

Yes, PGD is not easy with so much hurdles to overcome, but it can work!!! And I am grateful every day to know that my children are healthy and I will not have to worry about them in 10 years time.

Sadly some ladies don't even get to embryo transfer as all of the embryos have the mutation but on the other hand I also heard of couples who could even freeze some embryos and had their second child from the frozen embryo. We decided to have 3 cycles and stop and think after that but we were so unbeleivably lucky to get our two lovely daughters from those 3 cycles (cylce1 and 3 were successful).

xx

Jess25

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  • "Jess25" started this thread

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Reg: Jun 29th 2014

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Monday, July 7th 2014, 6:12pm

have just found out today there is a 3 month waiting list for the genetic counselling so until I have that I cant go any further! I know this isn't going to be an easy or quick journey but we have waited nearly 9 months to be referred as they kept forgetting to do it! what a joke. does anyone know if someone will listen if I complain or who to complain to?? do they not understand how draining it is waiting and waiting for nothing

Jess xx

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Tuesday, July 8th 2014, 12:30am

Oooh that's annoying. You can always try to ring to see if someone's cancelled. We kept doing that and most of the time got an earlier appointment. xx

Jess25

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Tuesday, July 8th 2014, 6:16pm

It is annoying as until we go for the counselling nothing else can happen, so frustrating!
Jess xx

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Wednesday, July 9th 2014, 8:53pm

Yes I remember the feeling as we, like you just wanted to get on and see the real PGD / fertility team.

The counsellors however, have been fantastic. So although frustrating at the time looking back it was well worth the wait. You just have to get into the system and once you are there everything is a bit easier. We could go back to them any time and after being succesful they arranged our children's blood test (we didn't want prenatal testing). Hope yours are just as nice as ours. Hang in there xx

miamiamo

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Friday, August 21st 2015, 12:39pm

Once for my
best friend I was looking for info on PGD in clinics in Poland and Czech.
Personally if somebody is a new to the topic, here is basic and very clear explanation on various forms of PGD Pre-implantation Genetic Diagnosis PGD/PGS-NGS | INVICTA Fertility Clinics

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