by Misty Elliff
about the author:
Misty Elliff is 51 years old and recently diagnosed as the first carrier in her family.
Mother-Daughter Carriers – Part 2
My name is Misty Elliff. I am 51 years old, married, and have 4 children: 2 boys and 2 girls.
My story is somewhat different from most because I did not find out I was a DMD carrier by having an affected son. Both of my sons do not have DMD, which is very rare.
I started looking online immediately trying to find out exactly what being a carrier for DMD meant for my daughter, and thankfully I found the Duchenne Registry. They have information about being a carrier so I contacted them and they provided testing for myself and my other daughter. My other daughter came back negative, and I came back positive.
The way in which I found out I was a carrier for DMD was through my 21-year-old daughter Audrey who started having unrelated heart issues over the past several years. Last year, we were at an appointment with a cardiologist/heart failure specialist after having her shuffled around from doctor to doctor and them having no idea what was causing her heart issues. I had asked the doctor if we could look at autoimmune diseases as possible causes of the issues Audrey was having. The doctor ordered genetic testing on Audrey, and we went about our way and waited for the results.
Months went by and we heard nothing, but did not think anything of it because we had no idea how long those results would take. The way she found out she was a carrier was in no way fun. We were at another appointment later last year and that doctor thought Audrey already knew her results so he started talking to her about the genetic testing and results and if she had been referred to a Genetic Counselor yet. Needless to say, there were instant tears, because one, we didn’t even know the results yet, and two, we had no idea what he was talking about or what to expect with this,
I have always had leg aches, muscle cramps, etc, and just thought it was part of life, I am not technically a manifesting carrier. We were lucky to have found a Carrier Clinic locally here at the University of Iowa Hospitals and Clinics, they are very thorough. I have had an echo and no heart issues were found for me.
Audrey has muscle weakness and goes to physical therapy two times a week and her heart issues which they say are not related to the DMD carrier status.
I do not know if I am the first in my family to be a carrier as there is no family history that I am aware of. My older sister was tested and she is not a carrier, but my mom who had advanced early-onset dementia passed and was never tested.