Fertility Friends Support Forum banner
1 - 6 of 6 Posts

·
Registered
Joined
·
22 Posts
Discussion Starter · #1 ·
I'm not sure if this is the right place for this post, sorry if it should be somewhere else - my excuse, I'm quite new! ;D  ??? :-[

After 2 EPs and many years of TTC naturally DH and I were told that IVF was our only option to concieve.  Having no funding from our PCT and wanting to help anyone else if we could we tried Egg Sharing.  However it turns out I'm a CF carrier.  My GP managed to get us an appointment with the Genetics Councellor who took DHs blood, we know have a 3ww for the results ^pray^.  Whilst we have our fingers very tightly crossed, DH has some family history of CF and so want to plan for what may come.

The Councellor suggested that if DH is a carrier we should be looking to have PDG, where they can test one cell from the emby/ blasty before it is put back.  She thought only 4 clinics in this country offer this (although she wasn't sure which), and that it can be quite expensive.  I'd love to find out more as it will help prepare us.  I've tried the HFEA but can't find a way of telling which clinics offer this.

Has anyone else used this? or does anyone know how I can find out which clinics offer PDG to screen for CF? 

Thanks so much. xxx
 

·
Premium Member
Joined
·
9,128 Posts
Hi Brownie.
The best thing to do is to speak to the individual clinics that offer PGD - there are only half a dozen or so in the UK. They will be able to tell you if they can offer testing for CF.

Another organisation that may be able to offer you some support and/or info is Antenatal Results and Choices - www.arc-uk.org

^fingerscrossed^ that it doesn't come to that!!! Good luck

Deb



/links
 

·
Registered
Joined
·
358 Posts
Hi Brownie,

I'm not sure how much help I can be...but I think I know a lovely lady that might be!! My DH and I are having PGD as my DH has a heart condition called Marfans, for which there is only one clinic in London that offers PGD for this condition (The Bridge Centre, London Bridge) BUT I believe CF is a more tested condition so there are a couple more clinics.

I am on the board May/June bugs with a lovely lady called Katherine 3 who is having PGD at Guys around the corner from The Bridge centre as her and DH both carry the CF gene. She'll probably be able to help you a lot more than I can so may be an idea to PM her?

If you want general questions about PGD, ask away and I will try my best to help with anything I can!!

All the best

Rach xxx
 

·
Registered
Joined
·
22 Posts
Discussion Starter · #4 ·
Thanks so much. Does anyone know if PDG is very expensive?

Rach.  Best of luck with your cycle.  The Councellor mentioned Guys, because Leeds hospital are linked with them, and I maybe coud have my scans and check up there, but travel to London for EC/ET.  I would rather not use Leeds so wanted to check out what else is available.

Deb - congratulations! I will try some of teh clinics direct.
 

·
Registered
Joined
·
358 Posts
Me again...

I thought i'd post our clinics price list to give you an idea http://www.thebridgecentre.co.uk/treatment1.htm#treatments_10

It has been our experience that you are unable to get PCT funding for PGD but depending on your PCT may be able to get funding for the IVF side of things? I have PM'd Katherine and she said drop her a line and she'll help you in anyway she can as she's clued up on PGD for CF! The London clinics I am aware of that do PGD are Bridge, Guys, ACU (Uni College London)

Thanks hun and all the best in your search! ^hugme^

Rach xxx

/links
 

·
Registered
Joined
·
1,028 Posts
hi i have cystic fibrosis and me myself am not having the tests for my husband but i do know that st barts in london does it .
it is very expensive but must be worth it if you dont want the risk!
hope this helps abit and good luck for the future.
 
1 - 6 of 6 Posts
Top