For moms who are carriers of Duchenne
Latest Activity: Mar 16, 2016
Started by Mandy Kerr. Last reply by Kathleen Drake Oct 29, 2013.
Started by Jessica Argueta Tucker. Last reply by Sif Hauksdóttir Jan 4, 2013.
Started by Betty Vertin. Last reply by Laurie Barton Mar 14, 2012.
Thanks a lot. Can I have her e-mail ?
You always know how to make a burden bearable. Thank you.
I need your advise too that I should check for my girl to face it from now or I just wait till at risk. I do not know which way is better for her.
Dear Trinh,... sorry. That "mommy guilt" can eat you up, so don't let it. We didn't know about Duchenne until we had kids, we couldn't possibly know, right? If we are carriers, then we got it from somewhere too, either our own mothers are carriers or we are the first spontaneous mutation (1/3 of cases with no family history). Do we blame our mothers in turn? No. Because they either didn't know (or couldn't do anything about it if they did anyway). We have the defective gene, but because we are women we are carriers. If we were born male we'd have Duchenne. Don't be hard on yourself. It is because of you that you have a wonderful son full of life who loves you with all his little soul and that you love and take care of in return. And hopefully Thuy will not be a carrier, but if she is she can deal with it before she has children, if that is what she wants. Hugs Trinh XXXXXXXXXXXXX
Trinh - i am so sorry. I am sure that this is difficult news to come to grips with. if there is anything that we can do to help you, please let me know. You might want to call Ann Martin - she is a genetic counselor who works with DuchenneConnect. she would be more than happy to discuss your results and your concerns.
I was just diagnosed as carrier. Understand it is not my fault, but it is because of me. Feel so so sorry to my son, and maybe my daughter too.
I am a carrier mom and I just want to put a word out there to moms who want to have more children. Science is AMAZING. There are so many reproductive options out there that I hope you can all investigate for yourself if interested or for your daughters who may be carriers as well.
I am struggling to stay positive.
HI Kristin, I also have two sons with DMD and manifesting (i believe ) carrier, with a 15 month old daughter. Something someone told me once really made sense. " I well know the struggles that are ahead. But there are so many, many, wonderful, special moments that most parents do not experience." it's a mom who also had two sons with DMD, only never had a daughter. Take good care of your beautiful family and know you are not in this alone in this.
I have a 10 year old daughter, too, but she has not been tested yet (my 7-year old son has Duchenne and I am a carrier). I have had the same thoughts about grandchildren. But then I try to think that we are in a time of such medical advances that if she wants to have kids, she will. Try to remain hopeful, that is how I get through some of the hard days. I am very sorry, I can totally relate, I would be feeling the same. When I get her tested in a couple of years I will be asking you for advice! The whole situation just sucks and I wish there was more we could do about it. Hang in there.
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