I am an 18 year old who is looking for support with siblings who have carry the duchenne gene, I am being tested soon and my mum is a carrier. Im worried if i find out i carry it to I wont be able to have children, this scares me. Please.
About my family:
I have a 15 year old brother with Duchenne Muscular Dystrophy, he is not in a wheelchair permanently yet ( does anyone else have any siblings like that ) iv heard its very rare and when we go to GOSH every 6 months all the other boys are in wheel chairs and my brother can walk. My mum is a carrier we dont know where it came from in my nans bloodline as we have no trace of them.
Name(s) of child(ren)/individual(s) with Duchenne:
Matthew Pezzuolo
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Southend-on-Sea
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Welcome Maria- We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you.
As Lisa noted, there are options even if you are a carrier. If this is something you'd ever like to talk about, please don't hesitate to contact us by phone, email, or message -- 800-714-5437 - community@parentprojectmd.org
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.
Hi Maria. There's no need to worry about having kids. Even if you are a carrier (which you might not be) there are options like cvs or pgd (both threads in here) that can ensure you have a dmd-free child. Hope your brother stays well and all the best to you.
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StaffPPMD said…
You may also want to check out a few groups on this site - DMD/BMD Siblings and Carrier Moms.
StaffPPMD said…
Welcome Maria- We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you.
As Lisa noted, there are options even if you are a carrier. If this is something you'd ever like to talk about, please don't hesitate to contact us by phone, email, or message -- 800-714-5437 - community@parentprojectmd.org
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.