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Does anyone know anything about Ullrich Muscular Dystrophy?

(10 Posts)
EmilyJane86 Thu 27-Feb-14 13:20:34

I am pregnant with my first baby and my parter has muscular dystrophy in his family. His brother is severely effected and I have been told it's his mother that is the carrier. I am seeing a consultant in April and hopefully they will be able to give me some guidance but in the mean time I wondered if anyone has any information on this subject. Thank you

TheOnlySeven Thu 27-Feb-14 14:28:04

Hi, I don't know anything about Ullrich and tbh I doubt you'll find much specific help on MN, but I'm a carrier of Duchenne Muscular Dystrophy which my son has. If his mother is a carrier that indicates it's passed on by the X chromosome, do you know if that's correct?

Genetic stuff is a bit complicated but if it's X-linked it means that your DH would have to have the condition himself for there to be any chance of passing it on to his children, the fact that it's in his family would be irrelevant. The best place I'd recommend for advice is the Muscular Dystrophy Campaign www.muscular-dystrophy.org

Feel free to PM me if I can be of any help smile

TheOnlySeven Thu 27-Feb-14 14:29:04

www.muscular-dystrophy.org

EmilyJane86 Thu 27-Feb-14 15:25:54

I believe it is his mother that's the carrier yes. My partner was tested if he would develop it but he won't. It's all very confusing. Thank you

TheOnlySeven Thu 27-Feb-14 15:37:22

Is it just a pregnancy consultant you're seeing? I saw a consultant when I was pregnant with DS, I knew more about the condition than he did angry. He had to refer me to a geneticist because he couldn't help.

Basically each parent passes on one chromosome, women are XX and men are XY ie. the woman always passes on the X, the man passes on X or Y which determines a boy or a girl. That's why women aren't affected, they have another X to compensate for the infected one. However if she passes on the infected X her son will develop the condition because he doesn't have the other good X to compensate. If this case she has passed on her good X to your DH and the infected one to his brother. Therefore your DH has a Y from his father and a good X from his mother, he doesn't have an infected X he can pass on therefore there is no risk of his children developing the condition. Hope that makes sense!

TheOnlySeven Thu 27-Feb-14 15:42:02

Just found this factsheet for you.

EmilyJane86 Thu 27-Feb-14 17:44:37

I am a nurse I should understand what your telling me but I will blame my baby brain for my confusion. So the chances of our baby having it is not a lot then? Only seeing an obstetric consultant. Thanks for your help it is greatly appreciated xxx

EmilyJane86 Thu 27-Feb-14 17:51:43

I'm sorry to hear about your son. His form of md is very bad isn't it. My partners brother only walked for about a year of his life. He's 27 now and in and out of hospital

TheOnlySeven Fri 28-Feb-14 09:00:28

Yes I doubt he will even get to 27 sad

tobemory Sun 02-Mar-14 21:13:46

Hi, ullrich is very rare. My 5 year old son has it. We have no history in our family and his other brother does not have it. Ullrich affects both boys and girls and is less affecting than duchenne but still very serious. My son walks but can't run or jump - the condition also has a wide range of severity. I would suggest seeing a geneticist who will be able to reassure you. Based on the fact that your partner does not have it then I would guess that the statistical risk is very low. Xx

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