Breaking Barriers: The story of Lizanne Schreur

Lizanne Schreur (23) is a woman living with Duchenne muscular dystrophy (DMD), a condition that predominantly affects males. In this interview, she shares her remarkable journey and the impact of DMD on her life, dreams, and aspirations. Moreover, as a Duchenne Ambassador, Lizanne is committed to breaking down barriers and raising awareness about the unique challenges faced by women living with DMD.

About Lizanne Schreur

As Lizanne introduces herself, she says, “Hi there! I’m Lizanne Schreur, a 23-year-old woman from a little country called the Netherlands. It’s quite unusual, but I’m one of the rare women living with Duchenne muscular dystrophy (DMD).” Born on April 23, 2000, her journey with DMD took an unexpected turn when she began crawling late at 1.5 years old. It wasn’t until then that her parents decided to seek medical advice, eventually leading to the diagnosis of Duchenne. In her early years, Lizanne’s life seemed relatively smooth, with regular hospital visits and heightened fatigue serving as early indicators of her condition. The true challenge presented itself at 16 when she began to fear the possibility of being confined to a wheelchair. Despite these adversities, Lizanne continues to take pride in her ability to make transfers with assistance and stand with help, cherishing the joys of a fulfilling life.

Daily life with Duchenne

In response to how DMD has impacted her daily life and dreams, Lizanne shares her vulnerability. “DMD took a toll on my mental health, leading to depression and self-harming tendencies. The COVID-19 pandemic only intensified these struggles.” Her journey also led her to develop Body Dysmorphic Disorder (BDD), which led her to fixate on perceived physical flaws, such as her shoulders. The absence of a romantic relationship further fueled self-doubt, causing Lizanne to question her self-worth. However, she remains steadfast in her pursuit of self-esteem and uses writing novels as an escape from the constraints of her disability. Remarkably, DMD did not deter Lizanne from her dreams; she pursued education in the UK for six enriching years and even had the opportunity to meet her idol.

Duchenne Ambassador

Asked about her motivation to become an ambassador, Lizanne reflects, “What sets me apart is being a woman with DMD, a rarity in the DMD landscape.” When presented with the opportunity to be the face of WDAD 2022, she realized the profound impact her story could have on other women living with DMD. “It’s vital to acknowledge that women can have DMD too,” Lizanne asserts passionately, aiming to erase the frustration of being overlooked. As an ambassador, she is committed to helping people understand that every life matters.

Interpreting ‘Breaking Barriers’

Delving into the theme of “Breaking Down Barriers,” Lizanne offers her perspective, stating, “This year’s theme, ‘Breaking Down Barriers,’ signifies the importance of connection and mutual respect.” She emphasizes that breaking down barriers means fostering understanding and respect for those with disabilities, promoting their inclusion in society. In her eyes, “No one should feel unwanted or disrespected just because they appear different. We’re all human.”

Key message

Lizanne’s message is simple yet profound: “My message is simple: Every individual is unique and beautiful in their own way, regardless of their background, abilities, or appearance.” She believes that imperfections are what make us perfect and encourages everyone to embrace their individuality.

Future goals

As she envisions the future, Lizanne expresses her desire for greater awareness surrounding women living with Duchenne, hoping to fill the gap she experienced growing up. Furthermore, she yearns for a society that fully embraces diversity and actively dismantles the barriers that marginalize individuals like her. Her dream is for everyone to feel valued and accepted, irrespective of their differences.

In Lizanne Schreur’s remarkable journey, we find not just a story of resilience, but an inspirational call to break down barriers and embrace the uniqueness within us all. Her unwavering determination serves as a powerful reminder that our imperfections are what truly make us perfect.

 

We invite you to read Lizanne’s inspiring story via social media. Inspire others to break down barriers in Duchenne or Becker by sharing your story.

Instagram: @lizanneschreur

Facebook: Lizanne Schreur

WDAD Documentary: Breaking Barriers

The official documentary for World Duchenne Awareness Day 2023 is now live! The WDAD Documentary: Breaking Barriers is directed by Nicoletta Madia and produced by Arimvideo.

The documentary is portraying stories from Italy, Turkey and Mexico about people living with Duchenne and their families and how they overcome barriers, everyday.

The official theme for World Duchenne Awareness Day 2023 is Breaking Barriers. People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. That’s why on September 7th we call on you to take on responsibility and help break down barriers for people living with DMD/BMD. Only together as a society can we create an inclusive society and build a better future.

WDAD Documentary: Breaking Barriers

 

The World Duchenne Organization would like to send special thanks to the families and volunteers who participated in the creation of this documentary.

 

World Duchenne Awareness Day 2023 Breaking Barriers

2023: Duchenne – Breaking Barriers

Official #WDAD2023 documentary

On September 7, the World Duchenne Organization launched a WDAD documentary that portrays the lives of people living with Duchenne Muscular Dystrophy across the globe and how they are each breaking barriers in their personal lives. Using storytelling techniques, the organization aims to provide insight into the barriers someone living with a rare disease may face, and provide encouraging and inspiring ways to overcome these challenges. The video is directed by Nicoletta Madia and produced by Arimvideo.

We urge everyone to share the documentary with the wider community. By working together, we can create a more inclusive and supportive society for people living with dystrophinopathies.

Theme: Breaking Barriers

The World Duchenne Awareness Day 2023 theme is ‘Duchenne: Breaking Barriers’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this, WDAD supports creating a society that provides equal opportunities for all. This year we organize the 10th edition.


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Duchenne: Breaking Barriers

People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. That’s why on September 7th we call on you to take on responsibility and help break down barriers for people living with DMD/BMD. Only together as a society can we create an inclusive society and build a better future.

Some examples of topics aimed at breaking down barriers in DMD include:

  1. Access to care: Ensuring that individuals with DMD/BMD have access to comprehensive and affordable medical care to manage their condition and improve their quality of life.
  2. Accessibility: Ensuring that public spaces, such as schools, workplaces, and community centers, are accessible for people with DMD/BMD.
  3. Advocacy: Raising awareness about the challenges faced by individuals with DMD/BMD and advocating for policies and programs that promote social inclusion and equal opportunities for people with disabilities.
  4. Community engagement: Encouraging individuals with DMD/BMD to participate in community activities and providing resources and support to help them do so.
  5. Employment opportunities: Creating job opportunities for people with DMD/BMD and providing support for them to find and maintain employment.
  6. Inclusive education: Providing opportunities for people with DMD/BMD to attend mainstream schools and participate fully in the educational experience.

For inquiries, please contact Suzie-Ann Bakker, communications coordinator at the World Duchenne Organization.