Join the educational event on Women and Duchenne that will launch on September 7, 15:00 CEST. This event is for anyone interested in how we can create a better future for people living with Duchenne and Becker MD.
This year’s World Duchenne Awareness Day, we are highlighting the various aspects of Women and Duchenne. The educational event is taking place in Rome, Italy, and is accessible via YouTube.
In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on the boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. The genetic mutation is located on the X-chromosome of which boys and men only have one. Women have, in general, two chromosomes, thus have a ‘spare’ gene which still encodes for dystrophin.
In addition to women with DMD, this theme Women and Duchenne includes all women. The women supporting the boys and men with Duchenne, the caregivers, the spouses, the sisters, the clinicians, the scientists and the patient advocates.
The main goal of World Duchenne Awareness Day 2022 is to raise awareness about Women & Duchenne. First, we will give the podium to women, to address their needs and challenges. Secondly, we are providing information about optimal clinical, psychological and social support for carriers. Third, we will put the spotlight on the female caregivers. Lastly, we are highlighting the engagement of strong female scientists, clinicians and advocacy leaders.
Carriers: Women who are carriers of the mutation can have clinical symptoms. This can vary from no symptoms at all to being as severely affected as boys and men with Duchenne MD.
It is important for Duchenne mothers, sisters, and aunts to be tested if they are carriers. Being a carrier can influence their daily life and mental wellbeing. Every Duchenne carrier, showing symptoms or not, need regular medical checks and should receive support.
Mothers: Not all mothers are carriers but all mothers need support and their challenges should be addressed. How to combine being a Duchenne MD mother with raising siblings, having a job, be a patient advocate, fundraiser or a mentor for others? We will discuss caregiver burden, mother love, how to look after other family members, how to look after yourself.
To illustrate what it means to be a Duchenne mother, Nicoletta Madia is interviewing mothers across the globe to collect their experiences. In addition to mothers, we invited a Duchenne sister and wife to share their stories, needs and challenges.
Lastly, we will discuss strong women in advocacy and science. Why did they choose Duchenne Muscular Dystrophy as field of expertise? Why are they so extremely dedicated? We hear from top professors and advocacy leaders in the field of Duchenne and Becker Muscular Dystrophy.
To conclude, this event is for anyone interested in how we can create a better future for people living with Duchenne and Becker Muscular Dystrophy. The online event is an initiative by the World Duchenne Organization.
Published on 24 August 2022.