ALD carrier - pregnant with a carrier

[Leab]

Hi all,

I am a 33-year-old carrier and have known for just over 10 years that I am a carrier. It has been in our family for as long as I can remember and have been around both males and females, children and adults who have suffered at the hands of this horrible condition.

For the last three years my husband and I have been going through PGD to ensure we do not pass this on to future generations and after three unsuccessful attempts we finally got pregnant with a carrier. We’re obviously delighted to be pregnant and having a girl but my worry has now started on how and when do I tell her she is also a carrier? I would like to try and talk to her about it as she grows up so she is used to it and so it isn’t a big shock when she is a bit older. Does anyone have any experience or advice with this?

Thanks

Leanne

[tieaknot]

Congratulations on your pregnancy! Hopefully by the time your little one is old enough to have her own babies or any possible symptoms there will be a standard treatment that will lead to it being less of a “devastating” diagnosis for all involved. Praying for that to be the case! Until then I don’t have advice but just a hug. I found out after I had my kids that I was a symptomatic carrier. Thankfully my son was negative. My daughter will be tested in the next few years. She knows nothing of my diagnosis or issues so it will be a big shock if she is a carrier. I also wonder if and when we should start discussing the possibility (I think it is likely) with her. She is almost 12 now. I will be following this to see advice of others.

But honestly, with the new gene therapies and other treatments in the pipeline, hopefully you won’t have to have the same type of conversations we have now or even 5 years ago.

[Leab in reply to tieaknot]

Thank you! It was a difficult decision in whether to put a carrier back or not have children as we didn’t want her to go through what we have for the last three years. But as you say, by the time she is wanting children hopefully they have found something else to help.

While I have grown up around this condition, I did find it really hard finding out I was a carrier in my 20s. I was hoping by openly discussing it that it may make it a little easier for her to take but I don’t really know what to do for the best!

[COwithAMN Administrator AMN EASIER Volunteer]

Hello Leab

I am not in any way the person to help you with the problem you are dealing with. But I know someone who is, and since you are UK-based the person I am thinking of is even more appropriate.

The lady is Karen at ALD-Life - and you can send her a private message using the "chat" facility (see the top of the page) to get her attention. She will be very able to help as she deals with these kinds of issues all the time. Her member ID is ALD-Life.

Get back to me if you have difficulty connecting with her.

Very best wishes

Chris

[Leab in reply to COwithAMN]

Thank you. I have been in touch with ALD life but haven’t had much of a response, I will try again.

[COwithAMN Administrator AMN EASIER Volunteer in reply to Leab]

OK, I will give them a shout on your behalf.

[Hillary]

Congratulations on your pregnancy. I am mum to a carrier and nanna to a PGD granddaughter. I understand your concern for your daughter but just wanted to say that as wonderful PGD is, when your daughter is ready to have children things will be even more so. Look forward to being a mum xx

[Leab in reply to Hillary]

Thank you x