World Duchenne Awareness Day 2022 Online Event Women and Duchenne

Official WDAD2022 event: Women and Duchenne

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.

Women and Duchenne

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. 

Main objective

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.

Event Women and Duchenne

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.

Why you should join

With extensive experience across care, science, policy, inclusion and research, this educational event is offering a unique perspective on Women & Duchenne, and how we can overcome challenges.

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.

Women and Duchenne

Women in Duchenne

Why for World Duchenne Awareness Day 2022, women are in the spotlight.

In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. This means that the genetic mutation is located on the X-chromosome of which boys and men only have one. Women have, in general, two X chromosomes. This means women have a ‘spare’ gene that is still encoding for dystrophin.

The role of dystrophin

The muscle breakdown is being caused by missing the genetic information to produce dystrophin. This is well-known in the field of Duchenne. A loss of dystrophin is leading to loss of motor functions, difficulties in breathing and coughing, and weakening of the heart muscles. At a later stage, the smooth muscle function may be affected. Additionally, dystrophin is also playing a role in the brain. Although there is still a lot to learn about the exact role of dystrophin in the brain, we see a higher percentage Duchenne boys and men with learning and behavioral issues.

Why women in Duchenne?

There are several reasons that this year’s World Duchenne Awareness Day has women in the spotlight.

  1. Mothers are often the primary caregivers.
  2. Women can be carriers with or without symptoms. Carriers of the Duchenne mutation can have symptoms in line with those seen in males living with Duchenne.
  3. Women with Duchenne exist. When a woman’s ‘other’ X-chromosome is not existing or not ‘turned on’, she can have exactly the same symptoms and course of the disease. These women have the diagnosis Duchenne MD and should be included when talking about Duchenne.
  4. All over the world there are extraordinary women playing an important role in the Duchenne field, in advocacy, research and care. Their work and impact will be highlighted during WDAD 2022
  5. With a longer life expectancy in Duchenne, a new group is emerging: those of the partners and spouse.

Mothers as primary caregiver

First and foremost: for all mothers, carrier or not, it is important to pay more attention to wellbeing and self-care. Not only by themselves. This should be encouraged by clinicians looking after their sons, friends and family members. A famous quote is: ‘You first have to look well after yourself before you can look after others.’ Many Duchenne mothers miss their regular health checks. In addition to this, research showed they are significantly less fit than other women their age. Having a healthy lifestyle including time for yourself is important for your mental health.

Duchenne Carriers

Secondly, carriers, whether they are mothers, sisters, aunts or any other carrier, need regular checks and support. For example for heart function, muscle weakness, and psychosocial issues. Learning difficulties may need to be checked. The intensity of these visits and support depends on how severe the symptoms are.

Women living with Duchenne

There are girls and women lacking dystrophin, having the same clinical features as boys and men. However, girls and women are often diagnosed with more difficulties and delays, because Duchenne and Becker MD are considered a male only disease. Often, women need to explain that they too, can be affected with Duchenne MD. We as Duchenne Community should raise more awareness for this.

Women in Duchenne science and care

The Duchenne Community is blessed with involvement of exceptional women working in the field of research and care for everyone affected with a dystrophinopathy. They are ambassadors and mentors at the same time. They are spearheading the translation of research and care recommendations for families.

DMD Partners and spouse

Over the past decades, life expectancy of people living with Duchenne and Becker Muscular Dystrophy has increased significantly. Young boys are growing up and become young men, and adults. Partners and spouses play an increasing role in their lives. In other words, partners and spouse are becoming a new group in the Duchenne community. We should include their unique perspective.

Goals of World Duchenne Awareness Day 2022

  • Support mothers as primary caregivers
  • Acknowledge carriers and their clinical needs
  • Recognize women living with Duchenne
  • Celebrate strong female leaders in DMD research and advocacy
  • Include the perspective of partners and spouse

This World Duchenne Awareness Day, we are honoring and learning from the extraordinary women in the Duchenne and Becker MD field. This is going beyond the carriers and women with Duchenne MD. The patient advocates fighting for new developments, the women organizing support groups and the researchers and clinicians who continue to make a big difference in the lives of everyone affected by Duchenne and Becker MD.

Educational event on September 7

Moreover, on September 7, the World Duchenne Organization will host an educational event on women and Duchenne. During this virtual event, experts share their knowledge, stories and experiences surrounding women and girls in the field of DMD/BMD. The event is open for everyone and registration is not needed.

Download materials

There are official materials that can be used to raise awareness for World Duchenne Awareness Day. Visit the Download Materials page to access the visuals and texts. All materials are available in multiple languages. In addition to finding the press kit, people can find Did-You-Knows, social media banners, and high resolution logo’s.

 

For questions and inquiries, please contact Suzie-Ann Bakker:

[email protected]

Women in Duchenne
World Duchenne Awareness Day theme 2022: Women in Duchenne

 

 

Photo by Omar Lopez on Unsplash

2022: Women & Duchenne

WORLD DUCHENNE AWARENESS DAY 2022

September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be ‘Women & Duchenne‘.

Awareness raising materials, such as the official press pack, high resolution logos, key visuals and images can be found here.

An educational event accessible to everybody will take place on September 7. The event launches at 15:00 CEST. Click the link below and select the bell icon to be notified when the event begins.

WOMEN & DUCHENNE

By creating specific educational materials World Duchenne Organization will highlight all the aspects connected with Duchenne and the female world:

  • Carriers: genetic and clinical aspects
  • Care considerations for female carriers
  • Mothers as primary caregiver
  • Girls living with Duchenne
  • Spouses and girlfriends
  • Female family member network of support
  • Women in science
  • Female international advocacy leaders

WORLD DUCHENNE ORGANIZATION

On September 7, the World Duchenne Organization will be hosting an online event. During this event, experts share their stories and experiences surrounding women and girls in the field of DMD/BMD. 

PRESS RELEASE

Click the picture below to see the official World Duchenne Awareness Day 2022 press release. 

For inquiries, please contact Suzie-Ann Bakker