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Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome

(7 Posts)
YouInTheMoonlight Sun 01-Oct-17 14:14:13

Had no idea where to turn with this, DD has recently been diagnosed with https://rarediseases.org/rare-diseases/mayer-rokitansky-kuster-hauser-syndrome/ . It's a genetic condition, only affects females, with a 1 in 5000 rate. So it's slim someone here can help but here goes.

It's a condition that is primarily defined by a curved spine (Scoliosis) and absence/underdevelopment of reproductive organs - Ovaries, Fallopian Tubes, Uterus, Vagina. And pain, lots of pain sad

DD has been told that her ovaries are intact and functioning but she has a malformed uterus so cannot bear children, but IVF/surrogacy would be on the table. Let's assume I'd carry for her.

As parents OH and I feel responsible (genetic condition yadda yadda), and DD has been going through emotional issues for a couple of years that are likely to be long-lasting. She's gone to college and we're concerned about her mental health. She's having therapy for said long-lasting issue but it will be some time before a spot opens up for general MRKH therapy.

As it's rare, we're all being investigated by a genomes project to check for other potential issues and DD will have follow-up next year.

Any advice, anyone have this abominable condition and have any wisdom? Thanks.

YouInTheMoonlight Thu 19-Oct-17 13:35:33

Just wanted to give this a bump just in case someone has advice.

LittleLights Thu 19-Oct-17 13:39:39

I'm sorry I have no personal knowledge of your DD's diagnosis but my DD has two rare conditions.

All I can I say is from personal experience and that's to stay strong for her and research everything you possibly can.

Is there a Facebook group you could join and chat to others with the same condition?

LittleLights Thu 19-Oct-17 13:42:46

PM me if you would prefer.

YouInTheMoonlight Thu 19-Oct-17 14:10:52

Hi @LittleLights

She has another rare condition, genetic, and is having heart surgery today for it.

I've been researching, I'm somewhat wary of publicly detailing everything so I shall PM you if that's ok?

LittleLights Thu 19-Oct-17 14:13:06

Of course, PM is fine.

LittleLights Sun 22-Oct-17 09:08:31

@YouInTheMoonlight How did surgery go?

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