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Genetic counselling

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  • 27-04-2010 8:53pm
    #1
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭


    Hi,
    I'm not sure if this is the appropriate forum to post this in, so if it isn't please let me know. My partner and I hope to try to start a family in the next year. My brother has a genetic condition, and I would like to know whether I am a carrier before trying to conceive. I would like to find out whether anyone has gone through genetic counselling and what this process has involved. I contacted the national centre for medical genetics but they really couldn't tell me anything without a referral from my GP, apart from the fact that it can take 14 months to get an appointment. That seems like a long time to wait before even being able to start trying, so I'm also wondering if there are private alternatives to doing this, and, again, if anyone has undergone this?
    I would be very grateful for any information or previous experiences that people have had.


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    #2
    angeldaisy
    Moderators, Education Moderators Posts: 2,281 Mod ✭✭✭✭angeldaisy


    I'm not sure if I can help, but my hubbie has a genetic condition and before we had our son, we spoke to our consultants and although they didn't do any genetic testing, as we already knew obviously, but they did help us to work out what our chances were of having a child with the same condition. in our case it was 50/50 and our son was born with the condition.
    I'm sure that if you contact your brother's consultant that they will be able to advise you where to go? if not why not contact the organisation that deals with the condition, they may be able to point you in the right direction.


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    #3
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi,
    Thanks for your response. I've made an appointment with the GP to find out more about genetic counselling and hopefully get a referral. It sounds like the information you got is exactly the kind of thing that I'm looking for - just to know before hand what the chances are. If I know it is unlikely that I am carrying the condition, then I can put my mind at rest, and if I know it is likely, then I can be a bit better prepared for that eventuality.
    If it turns out that it really will be a long time before I can get an appointment to see someone I'll ask my mother for the details of my brother's consultant. It probably sounds silly, but I don't really want to let her know that we are going to start trying for a family just yet, I'll be getting calls every week to check if it's happened yet. But obviously, if needs be, I will just bite the bullet!


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    #4
    lonestargirl
    Registered Users Posts: 1,501 ✭✭✭lonestargirl


    I live in the US and when I went for a pre-conception visit to my OB/GYN he ordered a genetic test for CF as part of the standard tests. My insurance covered it but I think the cost was about $350. I'd imagine it should be possible to get such a test done in a private lab, if not in Ireland then maybe in the UK.


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    #5
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    That's good to know that going private might be an option - I would be happy to pay a certain amount to be able to know rather than wait over a year for it. I find it really hard not to know - I'd prefer to have bad news and be certain than to be left wondering for ages!


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    #6
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Just to follow up, I've been put on the waiting list here in Ireland - which is up to 14 months long!!! If I'd had any idea it would take that long I would have looked into all this before starting to think about starting a family.... anyway, trying not to dwell on that too much, I know now. Anyway, looking in to getting a test done in the UK or abroad, and it seems that it might be possible to get one done if my GP refers me, but the problem is that the GP doesn't know a thing about all this, I could tell them more about it at this stage. So I'm just wondering, although it is a very long shot, whether anyone has any further information about getting genetic testing done outside Ireland before I resign myself to a very long wait?


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    #7
    emmiou
    Registered Users Posts: 145 ✭✭emmiou


    Hi Curious if you PM me I might possibly be able to help you with more information about testing.


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    #8
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi emmiou,
    That's such a coincidence that you messaged today. This morning I called in to my GP to get a copy of the test results that I received a few weeks ago. I actually got the test done in Great Ormond St, for £150. I just needed to get my GP to take a blood sample and have it sent to them.
    Thankfully the test was negative and I am not a carrier of the condition that my brother has. Needless to say we are hugely relieved, this is a great weight off our minds.

    It was quite frustrating and stressful to find out how to get this done privately, and if anyone is in a similar situation waiting over a year to have a genetic test done in Ireland, I would thoroughly recommend contacting the NE Thames Regional Genetics Service in Great Ormond St. Hospital. I was told the test would take up to 6 weeks but I received the results back in a week. Communication with the service was extremely efficient and very helpful.
    Of course, these things do cost a certain amount, but for me I was more than happy to pay that amount to save over a year of waiting and wondering.


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