Female Carriers
What is a female carrier? A carrier is a person who carries a genetic mutation in their genes. This mutation can be passed on to their children. In Duchenne, only females can be carriers because the mutation is located on the X chromosome. This means that while Duchenne is primarily found in males, it can affect females as well.
Understanding what it means to carry a genetic mutation can be confusing and often difficult to navigate. We created this helpful guide of empowering resources so carriers in our community can better advocate for themselves and their families. If you have any questions or need additional support, please reach out to us, and we will be happy to help in any way we can.
Support Groups
Porch Nite
A support group for moms of individuals living with Duchenne to connect about their journey, spread love, offer support, and more.
Carrier Conversations
Jett Foundation’s monthly virtual support group for women in the Duchenne community who are carriers of Duchenne muscular dystrophy (whether they are manifesting or not).
Caregiver Connextion
A support group for parents, family members or caregivers of females who have been diagnosed with Duchenne or are symptomatic carriers.
Resources for Female Carriers
Action Duchenne
A Leaflet for Women Who Know They Are, or Who Think They May Be, a Carrier for Duchenne or the Milder Form of Becker.
Defeat Duchenne
Cardiac Care of Children with Dystrophinopathy and Females Carrying DMD-Gene Variations.
Jett Foundation
Jett Foundation’s Women in Duchenne Panel discussion recorded on World Duchenne Awareness Day 2022.
Rare Disease Advisor
Article: Female Carriers of Duchenne Urged to Seek Early Treatment for Heart Problems
ScienceDirect
Duchenne and Becker Carriers: Evidence of Cardiomyopathy by Exercise and Cardiac MRI Testing
UMass Chan Medical
The Duchenne Program – UMass Clinical Care – includes Females with Dystrophinopathy
World Duchenne Organization
World Duchenne Organization’s WDAD Educational Event: Women and Duchenne
Jett Foundation
Jett Foundation’s Book of Knowledge for Female Carriers of Duchenne muscular dystrophy.
Physicians Who Treat Female Carriers
Provider Name |
Specialty |
Clinic |
State |
Phone Number |
Adult/Pediatric |
Notes |
| Dr. Andreas Barth | Electrophysiologist/Cardiology | Johns Hopkins Main in Baltimore White Marsh Outpatient Clinic |
MD | Call 443-997-0270 | Adults and Female Carriers | |
| Dr. Tamara Bradford | Cardiology | Children’s Hospital New Orleans | LA | Call 504-896-9751 | Pediatric Patients/Carriers | Sees younger females with dystrophinopathy |
| Dr. Daniel Garry | Cardiology | University of Minnesota Physicians | MN | Call 612-884-0600 | Pediatrics/ Adults and Female Carriers | |
| Dr. Larry Markham | Cardiology | Riley Children’s Health Hospital/Indiana University | IN | Call 317-944-8906 | Pediatrics/ Adults and Female Carriers | |
| Dr. Pradeep Mammen | Cardiology | The University of Kansas Hospital | KS | Call 913-588-1227 | Adults and Female Carriers | |
| Dr. Teresa Wang | Cardiology | Penn Duchenne Carrier Clinic | PA | Call 215-662-3606 | Adults and Female Carriers | |
| Dr. Jonathan Soslow | Cardiology | Children’s Hospital at Vanderbilt | TN | Call 615-875-8500 | Pediatrics/ Adults and Female Carriers | Sees younger females with dystrophinopathy |
| Dr. John Wells | Cardiology | Vanderbilt Heart and Vascular Institute | TN | Call 615-936-8232 | Adults and Female Carriers | Adults only at this time |
| Dr. Ernest A. Haeusslein | Cardiology | Ascension Texas Cardiovascular – Ascension Seton Williamson Cardiology | TX | Call 512-324-4812 | Adults and Female Carriers |
Provider Name |
Specialty |
Clinic |
State |
Phone Number |
Adult/Pediatric |
Notes |
| Children’s Hospital New Orleans | Comprehensive Neuromuscular Clinic | Children’s Hospital New Orleans | LA | Call 504-896-9458 | Pediatric Patients/Carriers | Sees younger females with dystrophinopathy |
| Dr. Lauren Elman | Neurology | Penn Duchenne Carrier Clinic | PA | Call 215-662-3606 | Adults and Female Carriers | Certified Duchenne Care Center |
| Dr. Peter Karachunski | Neurology/Neuromuscular | University of Minnesota Physicians | MN | Call 612-884-0600 | Pediatriacs/ Adults and Female Carriers | |
| The University of Rochester Medical Center | Neuromuscular | University of Rochester | NY | Fax 585-273-1255 (referral) | Pediatrics/ Adults and Female Carriers | |
| Dr. Brenda Wong | Neurology | UMass Duchenne Clinic | MA | Call 774-441-7615 | Pediatrics/ Adults and Female Carriers |
Resources from Parent Project Muscular Dystrophy
Pat Chats: Dr. Teresa Wang (UPenn) Discusses the Duchenne and Becker Carrier Clinic Pilot
First Results from PPMD/ Nationwide Carrier Study: Evidence of Cardiomyopathy by Exercise & Cardiac MRI
Carrier Archives: view all PPMD’s recent materials and events pertaining to female carriers.
Genetic Testing: Decode Duchenne Program
Meet Trina, Jett Foundation Resource Specialist
Trina was born and raised in a small, rural town in South Louisiana. Two of her three children are impacted by Duchenne. Trina brings a unique perspective to her new position as a mom and caregiver, but also as a patient having been diagnosed as a manifesting carrier/female with dystrophinopathy. As Jett Foundation’s Resource Specialist for Females in Duchenne, Trina will is responsible for managing Jett Foundation’s relationships with females impacted by Duchenne in the community. Her role assists in connecting women with resources and support as well as coordinating programs and events focused for this demographic within our Duchenne community.
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Thank you to our generous sponsors for helping us provide these resources for our community.
