AMN and pregnancy

[Elouisa]

Hi friends,

I am a 37yr old female AMN carrier. I really want to have a child, hopefully without my AMN x-chromosome. I’ve heard that having your eggs extracted and tested for AMN does not have very high accuracy. Does anyone have experience with this?

Thank you

[StevenSims]

Hi,

You’ll be able to have PGT pre genetic testing it’s a bit like IVF, ALD is approved for this.

All the best

[Elouisa in reply to StevenSims]

Thanks so much for the advice Steven!

[Cherie]

I notice you are in USA.My daughter is just going through this in Australia. She says you need to find out from the different health companies that will do PGD their %rates of accuracy. She chose hers due to the high rate of accuracy of over 99%.

[Elouisa in reply to Cherie]

Wow, that’s much higher accuracy than when my cousin tried it 7yrs ago. It’s good to know how much the accuracy of the testing has increased. Thanks for your response!

[Leab]

Hi Elouisa,

I went through PGD. Essentially it is the same process as IVF where they collect your eggs and create embryos, they then extract a cell and test them. They will only test for embryos with ALD but consider carriers to be viable. After testing we had two unaffected and three carriers to use. Unfortunately the two unaffected did not take so we tried with a carrier. We were lucky on this occasion and now have our beautiful daughter. Unfortunately she is also a carrier. I started my PGD journey hoping to break the link of ALD in our family as I was the last person who could pass it on. But I wouldn’t change my little girl for the world.

There are other options (or there are in the UK) if you were to get pregnant naturally. You can have a blood test early on to test if it’s a girl or boy. If it’s a boy you can then have the baby tested for ALD similar to a Down syndrome test. However, I didn’t feel comfortable with this process and the difficult decisions I may have to make.

Happy to answer any questions you may have if you would like to contact me.

Thanks,

Leanne

[Elouisa in reply to Leab]

Leanne, thanks so much for sharing your story with the process! How long did the whole process take, from egg extraction to each implant? Just curious what kind of timeline I should expect with this process. Thank you so so much!

[Leab in reply to Elouisa]

Hi Elouisa , I have sent you a direct message.

[Abcd1Kat]

Hi Elouisa—I’m not sure if you’re on Facebook but there is a special group that just addresses this very issue. ( called ALD Support for Reproductive Technology Options). Many folks in that group are in the process of IVF-PGD or have been through it so there is much information to be found (I didn’t do it so I’m no help). Also, ALD Connect had a webinar about this topic a few months back so the video recording is posted on the website (aldconnect.org). I wish you good luck with this important process 💙

[Elouisa in reply to Abcd1Kat]

Hi Kat, thanks you tremendously for these leads. I joined the FB group and I’m finding lots of helpful info there.

[fmorgan458]

Hi Elouisa:

There is a way! My daughter is going through the steps. I can connect you with her if you email me at [e-mail].

[Elouisa in reply to fmorgan458]

Will do! Thank you ❤️

[sbu99]

Hi Elouise,

I am 32 and also a carrier. My husband and I are in the very early stages of PGD. As Leanne has commented we are also hoping to break the ALD link in our family. My Father is quite badly affected with AMN, although he did not show signs until later in life, and it is absolutely heart breaking to see.

I am also happy to answer any questions you may have, although I may be more use once we are further into our treatment!

Glad to have found this group, as I really struggle to find any helpful information and support.

x

[Leab in reply to sbu99]

If you need any advice or want to chat I’m happy to help! It’s a rollercoaster of a journey doing PGD.

[Elouisa in reply to Leab]

Thank you both for your offer of support! I’m meeting with a reproductive endocrynologist on Monday to begin discussions. Any advice you have or stories about your journey would be most helpful, even if in the early stages, thank you so much!

[AnxiousIVFer]

Hi Elouisa,

I'm also a female AMN carrier and I've been doing PGD for the last 5 years for this reason. I've done 4 cycles of IVF so I have lots of experience. You'll have to go to through IVF and they will test your embryos. The accuracy is 95% for my lab. After I got pregnant, I also did the blood test to see if it was a girl or boy. If it was a boy or if I wanted to even if it's a girl, I could also do more invasive testing to make sure the baby is not a carrier/affected. There has been a lot of heartbreak but finally I managed to give birth to a healthy girl. If you have any questions let me know. FYI, I'm in Canada. Good luck with everything.

[Elouisa in reply to AnxiousIVFer]

Thank you so much for your words of wisdom and congratulations on your healthy baby girl!