Carrier Moms

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Comment by Gicela Longo on May 9, 2012 at 12:12am

My 10 yr old daughter,Kelly, is a manifesting carrier of DMD.  Diagnosed at 5 yrs, Kelly showed signs of muscle weakness since infancy.  Since her diagnosis, Kelly receives physical therapy 2x/mos, attends swimming classes 1x/wk, and paricipates in horse riding lessons 1x/wk. These physical activities have helped her maintain muscle strength, but flexibility is still a challenge. Kelly wears nighttime leg braces to keep her calves stretched and her ankles flexible. Thankfully, her condition has not worsen and she is able to participate in other activities such as Girl Scouts.  I've read most of your comments and would like to keep in touch with you all.  My hope is that as Kelly's journey with DMD continues, we can all share and exchange information that can help carriers live healthy, pain-free lives.

Comment by Jessica Argueta Tucker on March 14, 2012 at 12:16pm

http://www.facebook.com/groups/199703830129833/

Comment by Gisel Rivero on July 5, 2011 at 9:21pm

I was diagnosed as a carrier mom 3 yrs this august.. I've never been flexible, but I am getting a lot of leg pain, specially on my calves.. I work with special needs children so I had just thought of it as being from the heavy lifting I do everyday being that I'm only 5"2 and weigh 100lbs.. What kind of specialist should I go see?

Comment by Mandy Kerr on July 5, 2011 at 5:11pm

Oops sorry ladies!  I am still tring to learn how to do things on this site and I just emailed out a message to everyone on the list about tight muscles and iliotibial band fraction syndrome (ITBFS) and how I can get a hold of the Carrier Mom DVD!  Thanks!

Comment by Christine Stalling on May 27, 2010 at 12:10pm

I was just browsing through this discussion and saw Fran's question about whether other carrier moms are runners and thought I would add in. I was diagnosed as a carrier just a year ago right after my 9 year old was belatedly diagnosed with DMD. I have been a runner most of my life (I just turned 47) as well as a weight lifter. I have run marathons and continue to run half marathons now, averaging about 30-35 miles a week recreational running. Because I am a carrier and I prefer long distance runs, I had an echocardio. done last year and my heart is fine. But, I have never been flexible but I rarely take the time to stretch even though I know I should.

Comment by Wyatt's Mommy, Melissa on May 23, 2010 at 1:38am

Courtney, there is alot of information on this site about that subject. My understanding is that isn't about 20%. But please don't quote me on that. I know that I read an article on this site that talked about this. I wish I could remember where it was, good luck. And I'm sorry you're having some issues.

Comment by Aiede M. on May 22, 2010 at 5:00pm

To all the mother out ther who did Genetic IVF, How did you guys do? Did it trun out easy? Was pregnancy achived and suceesfull from the 1st try?? How much did it cost?? pleas let me know, I am very curious to know. Thanks

Comment by Courtney Price on May 22, 2010 at 3:03pm

i am a carrier of duchenne and for the last five or six years i had had increasing problems with my legs among a few other things. I recently had it check and the neurologist i am seeing says that it is due to the duchenne gene..they say though it is rare it is possible for carriers to have some of the same symptoms as their sons. They dont know alot about carriers and how it effects them. Hope that helps.

Comment by Karen Pfeifer on April 20, 2010 at 10:46pm

Google, manifesting carrier of duchenne muscular dystrophy, this will answer some questions about carrier symptoms, including the cardiac risk.

Comment by Kristin Linke on April 20, 2010 at 9:57pm

From my understanding of what the genetic counselor said about being a carrier of Duchenne is that there can be cardiac risks. She never mentioned anything about having the same types of symptoms our sons have. I have looked up information and have only come across the possible cardiac risk for carriers. TTFN

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