World Duchenne Awareness Day 2022: #WomenAndDuchenne
Each year, World Duchenne Awareness Day highlights a special theme for further education. This year that theme is Women & Duchenne to raise awareness about females living with ‘dystrophinopathy’ (the spectrum of muscle diseases that are caused by a change in the dystrophin gene), provide information and resources for carriers, and spotlight the female caregiver experience.
We encourage you to share your story as a girl or woman with Duchenne, a carrier, mother, caregiver, partner or sibling of a person living with Duchenne or a woman professionally working in the field of Duchenne. You can write your story and add photos, or record your experience. Publish your story on social media with the hashtag #WomenAndDuchenne to join the global community in raising awareness.
Dr. Mena Scavina: My Story as a Clinician
Collaborating with PPMD as a neurologist in a Certified Care Center, and as part of the Clinical Care Team, I have had the privilege of meeting women whose children have Duchenne, nurses and coordinators from Certified Centers throughout the country, PPMD staff, and representatives from the pharmaceutical industry. After years of caring for individuals with Duchenne, I thought I understood many of the challenges families face but realize I have only scratched the surface.
Working with PPMD and extending my experience outside of the clinic, I have had the opportunity to hear from mothers and what it was like when their child was diagnosed, what words were used then and throughout their medical journey, and how those words have impacted their outlook.
I have also learned about the ripple effect on their relationships, their career goals, and their own health. At the same time, I have a better understanding of their superpowers, what they strive for, and the hopes they have for their sons, their families, and themselves.
As a provider, being part of a larger network of women and families has emphasized for me, the importance of choosing better words, asking about those superpowers, hopes and goals, and providing encouragement and support in addition to a list of prescriptions and tasks.