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Carrier Moms

For moms who are carriers of Duchenne

Members: 132
Latest Activity: Mar 16, 2016

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Carrier Who Decided to Get Pregnant Anyway

Started by Jessica Argueta Tucker. Last reply by Sif Hauksdóttir Jan 4, 2013. 16 Replies

3 sons with DMD

Started by Betty Vertin. Last reply by Laurie Barton Mar 14, 2012. 3 Replies

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Comment by Melanie Horton on August 20, 2008 at 1:39pm
Hi Carrier Moms,
I am a DMD carrier. My brother had DMD. Luckily I had a daughter so she will not have the disease. She is too young to determine if she is a carrier (so the genetic counselor tells me). I would really like to have another baby and dear husband and I are looking into IVF and Microsort with artificial insemination. Do any of you have any advice or stories about these procedures to share? I am just looking for someone else who is dealing with these issues.
Comment by Tanya Fleming on August 18, 2008 at 11:00am
I too have always had tight heel cords. I have been active too, but never as flexable as most people.
Comment by Melinda Colby on August 4, 2008 at 11:44pm
My son was diagnosed with Duchennes in April 2008 and a month later I found out I was a carrier. There is no evidence of DMD in our family. My grandmother had two daughters, so either my mother is a carrier or my DNA mutated when I was concived. I have two sisters and no brothers. They are both in the processes of being tested as carriers. I learned that my great grandmother died of a heart attack at the age of 43, but that was a long time ago, so other factors could have had a play. As far as symptoms go I show few, but sometimes I get heart pains. I had an echo done, but nothing concerning was found. I also have tight heel cords and hamstrings but that hasn't had that much of an affect on me. I always thought it was tendonitis. I was a dancer for 15 years. I started when I was 8, and danced all through college. I always have struggled with my flexability, I would spend hours stretching. It took me months to reach my flexabiltiy goals, and if I stopped I would loose it quickly. However, I run and teach aerobics now, and somtimes struggle with tightness in my lower calves and heel cords. I don't know if that is a symptom of DMD carrier of that I am just getting old. Other than that, I don't show any other signs of DMD. I also just found out that my daughter is a carrier (bummer).
Comment by Kari on July 31, 2008 at 9:56am
Has anyone tested their two x chromosones yet? I was talking with a Neurologist yesterday at VIP Day at LMU MDA Camp and he had asked if I had this certain test done that could determine exactly which was working and might help to see what kind of symptoms I could end up with. Sounds like this might be the answer we are all looking for. I might try to get in touch with him and find out exactly what the test is and then have it done since I have been having an irregular heartbeat for over 5 years now and this may be the cause as well as weak heavy legs and arms at times.
Comment by Ruth Rhodes on July 22, 2008 at 3:47pm
I did not find out that I was a carrier until I had my 3 boys. Miracle of miracles 2 of them are DMD free. My middle son was not so lucky. Some days are good others are horrible. We found out a year ago the guilt that I felt was overwhelming. I felt so irresponsible. Then again how was I suppose to know that I was a carrier. There is no apparent history of it in my family. My mom still needs to get tested. She had 4 brothers all of them are fine and my brother who is fine.
Even if I find out that my mom is a carrier it won't change my son's fate. That's how I see it.
I never noticed any difficulties growing up. I enjoyed playing sports and running track. So to find out that I was a carrier was a huge shock, and then to find out that it is my fault that my son has it. It's been a year 2 months and 12 days since we found out.

I don't cry every day now.
I stay positive and hopeful. I am so thankful that I have such a supportive and understanding, and loving husband.
Comment by Michelle LB on July 8, 2008 at 12:51am
Thanks for your reply Patty.
Comment by Michelle LB on July 5, 2008 at 6:33pm
If any one can offer advise about options for trying to have children after knowing I am a carrier I would appreciate it. My 5yr old has DMD and my 22mo old boy does not. We did not know about my older son's DMD until my younger son was 1. We got lucky. I don't know if we should tempt fate again. Any advise would be appreciated.
Comment by Colin McKenzie on June 30, 2008 at 4:10am
I am Suzanne McKenzie a proud mom of two beautiful boys with DMD, they are Justin 7, and Joshua 3, I also have a little girl Jessie of 2 her carrier status at this time is not known, there are ethical reasons why and therefore we have to wait until she reaches an age of consent, we have found this very frustrating as we are her parents and feel we are the best equiped to tell here when the time is right, as she gets older she is going to see and experience much, my heart breaks for her as everyday my heart breaks for my two beautiful sons. We, my husband and I wanted another child to support and go down this road with her when all is said and done she will loss her brothers and parents and my husband and I both have sibling we are very close to and wanted the same for her, we took the plunge and after much soul searching and debate decided to try for one more we ended up leaving it in gods hands, after a CVS which I have to say was more traumtic than I thought and waiting for the results which came in two parts, I was a mess for two weeks waiting waiting waiting it felt like forever, but then the first result definately a little boy, I was shattered and could only believe in the worst on the other hand my husband was a rock and never wavered from his belief that this little boy was perfect, three days later the DMD result and I am thrilled to say my husband was right and I am 41 and pregnant again with our gift, for us our family is now how it should be and we feel blessed, I never imagined I would be a mom of 4 children but I am so happy I can finally share things, it has taken 2 years to talk about my family in a forum like this, the first year I mourned my not perfect little boys and slowly came to terms with the guilt, but as my husband has said we were not aware that I was a carrier as I come from 4 generation of women so how was anyone to know, there is no blame and therefore no guilt, just love and compassion for my boys, we as a family make everyday count and do everything together and this keeps us united and bonded in everyway, and now I look and see I would not change a thing every, I want to be there for my children and want to show them we can have a good life from every life.
Comment by Tanya Fleming on June 27, 2008 at 7:09pm
Do you remember if you were clumsey as a child? I know I was. I was active but not quite like other girls my age. They could always do things better. Run faster cheer better. Anyone else want to share their idea.
Comment by Kathleen Cacciaguerra on June 24, 2008 at 10:19pm
I am a carrier mom (99.5%) with absolutely no family history. I have 2 perfectly healthy brothers and 2 perfectly healthy cousins (boys) and a perfectly healthy uncle (on my mom's side). My mother and aunt were both tested with negative results.
 

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