Anyone experienced genetic testing?

[StellaDelMare]

Myself and DH are looking to TTC in July this year.

My cousin has a rare genetic disorder which makes him unable to talk, sit up or anything. He is basically looked after like a baby despite being 20.

I am aware it is very rare but for my peace of mind I would like to get tested to see if I carry the gene.

Has anyone had experience of getting genetic testing? How did the process go and how long did it take? (Just trying to factor it in for when we TTC).

This is something that is worth addressing now. Assuming that you are in the UK I would advise a review with someone with expert knowledge so that it can be worked out what the chance is that this could affect you and your children. If it may be an inherited condition (many are not, they are just a genetic accident for that one person) then family testing you can be discussed.
By the time you are pregnant you should aim to know whether this is or is not a potential issue for your baby and what your options are.
Happy to discuss privately if you want to PM me

Thank you @Nanmumandmidwife

It is genetic, they asked my Aunty and uncle if they were related because the chances are so slim as both parents need to be carriers (they aren't related) but because of seeing the quality of life my cousin has had I want to TTC with full knowledge of whether or not I am a carrier of this gene and whether I would be passing the gene on etc.

Would I just go about this by speaking to my GP?

Ask your GP to refer you to your local nhs clinical genetics service including details of your affected relative. They can assess and provide you with any appropriate testing

As PP says, as you have this information it is certainly appropriate to ask for referral to clinical genetics to discuss testing as soon as possible. That is very sensible. Many GPs will have limited experience of this type of situation. It is vital that they explain in the referral that you are planning pregnancy in the next few months so that you are seen promptly. I would strongly advise that you wait until you have got results.

A relative has a genetic life limiting condition. We didn't know that this condition was carried in our family until they was born. Myself and another sibling contacted our gp surgeries, armed with referral forms from a specialist at my relatives hospital, to arrange testing as we had a 50/50 chance of also being carriers. My sibling had their tests and results within approx 12 weeks. It's a fairly common condition and we know the specific mutation. I'm guessing that has a huge impact on time.
I didn't hear anything back but presumed all was going ahead.

I then discovered I was pregnant unexpectedly, and rang the surgery to chase up the referral, only to find out they hadn't actually sent mine. In the end I had my test and results back in around a week - results by phone to save time. I was a carrier, so it took another week or so for my partner to be tested/receive his results. Luckily all was well. So for me, in a panic, it took about 3 weeks all in. But these were in unusual circumstances.