Category: News

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

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.

Meet Troy Chauppetta, a 28-year-old Duchenne Ambassador from Massachusetts. He’s a USA wheelchair Power soccer team player, graphic/website designer, and living independently. Troy defies odds with his hand-controlled vehicle, roommates, and dog. He has a strong message: Disability is ability. He’s breaking barriers and advancing Duchenne awareness through technology, support, and determination.

About Troy Chauppetta

“My name is Troy Chauppetta, a 28-year-old from Massachusetts, USA. I’m passionate about sports, playing for the USA wheelchair Power soccer team. I am all about independence, driving my vehicle with hand controls and living with roommates. I’m also a proud dog owner. When I’m not on the field or exploring with my dog, I channel my creativity as a Graphic Designer and website designer.”

Daily life with Duchenne

“My daily life with Duchenne is great defining all the odds. My Personal Care Assistants get me up and ready to take on the day. Most of my creative work is done on the computer. I take care of my apartment and make sure my dog is all set for the day. But as people know, living with a disability there are lots of ups and downs but I try to keep it positive. I have a twin brother who also has Duchenne and having each other helps me with the daily life living with Duchenne. Because I have someone always by my side that I relate to!

Duchenne Ambassador

“My motivation stems from a strong desire to share my journey, demonstrating that one can overcome challenges while living with a disability. I’m determined to inspire and show that defying the odds is possible.”

Interpreting ‘Breaking Barriers’

“To me, ‘Breaking Barriers’ signifies the ability to lead a fulfilling life despite a disability, achieving anything by harnessing determination and willpower. You can live a great life with a disability and do with you put your mind to.”

Key message

“My message is simple yet powerful: I want people living with Duchenne and Becker muscular dystrophy not to limit themselves just because they have a disability. I see the world Ability In disability you have the Ability to do with you dream.”

Future goals

Troy is positive when asked about the future in terms of breaking barriers and advancing awareness for Duchenne/Becker muscular dystrophy. “I see lots of wonderful things happening in the future with Advancing awareness with all the technology and advancements and the wonderful support groups we have!”

Looking forward, Troy is optimistic about the future, anticipating significant progress in awareness and support for Duchenne and Becker muscular dystrophy through the integration of technology and the unwavering strength of support networks.

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

Instagram: @_tc09t

Facebook: Troy Chauppetta

Meet Anil Jalhan, also known as “The DMD Guy” on social media. At 26 years old, he shares his journey with Duchenne muscular dystrophy (DMD). Despite facing physical challenges, Anil broke barriers by graduating from university and become an independent individual. As a Duchenne Ambassador, he aims to create a positive community, raise awareness, and inspire others to share their stories.

About Anil Jalhan

“My name is Anil and I am 26 years old, living in the UK. I thought I would talk about my Duchenne Muscular Dystrophy (DMD) journey. Prior to my diagnosis I grew up not knowing I had it and even my parents didn’t know. As I was the first boy born after my parents had two healthy children, it was likely I would be healthy too. Eventually we found out that boys were mostly affected and how it can be passed down in the family.

I don’t remember much, but I remember walking to nursery and school with my mother. Eventually my mother would receive a phone call from the school informing her that I kept falling frequently and was moving much slower than other kids. This was the very first signs of the condition. Once we decided to get me checked out, it was clear what was wrong with me. I was diagnosed with Duchenne Muscular Dystrophy (DMD)

After the confirmed diagnosis, my future was full of questions and uncertainty, as I didn’t know how it would affect me. I would continue to move forward while going through these physical changes. I would experience being wheelchair bound and weak whilst enjoying my primary school days.

Once the time was right, I would later make my transition to my new special needs school. This was a huge moment of my life, as the school helped me become who I am today. Giving me the confidence to become an independent disabled person.

I am the person today because of this experience. I believe my disability has taught me many valuable life lessons and has helped shape the person I am today. My journey has been difficult with many barriers and many still to come. But I aim to just keep going. I usually like to say my future may not be clear, I may have a disability, but this will not stop me from achieving my dreams.”

Daily life with Duchenne

“I want to say being physically weak and all the constant changes I have and will go through. But I did come to the realization that it’s something I had to just accept and I could still pursue my dreams. One of my dreams was to graduate from University and I did back in 2019. With the help of assistive technology this was possible. One major barrier was my housing situation which I will talk about in another post hopefully. But this really was a serious one which stopped me from getting out of the house and sometimes even going to university.”

Duchenne Ambassador

“With Duchenne and my page, my goal has always been to create a positive Duchenne community for other DMD guys like myself. Also to raise as much awareness as possible. The WDAD has a similar goal which really motivated me to get more involved. I also wanted to share my story to hopefully encourage others to share theirs.”

Interpreting ‘Breaking Barriers’

“As someone living with Duchenne Muscular Dystrophy (DMD) like many we go through many life changing moments during our Duchenne journey. With many battles and emotional moments. From not being able to walk or losing the ability to play your favorite sport. I think my interpretation of ‘breaking barriers’ is to have the ability to accept these changes and adapt to them while trying to remain positive. Lastly, I also think going through all these trials and tribulations and still being able to achieve something is breaking barriers. No matter how big or small the goal is.”

Key message

“The journey can be quite emotional at times and tough. The only thing we can do is try our best to enjoy life no matter how long it is. Also to create these precious memories. Through my stories I hope to show the reality of Duchenne but also try and show how life could be enjoyed as well. Another general message to the world is that everyone is affected by this, men, women and kids so let’s do something about it.”

Future goals

“I hope to see more people with Duchenne continue to break barriers and to share their story. Further increasing the awareness for Duchenne and Becker Muscular Dystrophy. In terms of my future I also will continue to overcome challenges. I hope to make use of any opportunities I get to raise awareness for Duchenne. Lastly I remain hopeful that there will be a cure in the future mainly because of our awareness efforts.”

We invite you to follow Anil’s story via Instagram and TikTok. Here he shares messages on resilience and the pursuit of joy in life. All while advocating for a future cure through increased awareness efforts. We are looking forward hearing your story about breaking barriers!

Instagram & TikTok: thedmdguy

In this interview, we meet Brad Miller (47), a Canadian blogger living with Becker muscular dystrophy (BMD). Brad shares his remarkable journey of adapting to challenges posed by the rare disease, and pursuing his passions with confidence and determination. He talks about his childhood experiences to creating his blog, “My Beckers Story,” and founding “Laps for Muscular Dystrophy.” Brad’s story is an inspiring testament to breaking barriers and raising awareness for BMD.

About Brad Miller

“My name is Brad and I’m a Canadian blogger living in Ontario with Becker muscular dystrophy. As a child I was having trouble keeping up with the other kids my age. This led to a visit to a family doctor who thankfully had some knowledge about muscular dystrophy. At the time, my enlarged calf muscles grabbed his attention. So, at the age of 10 I was sent off for some testing which also included me having a muscle biopsy. After that my parents were given the news that I have Becker muscular dystrophy.”

Becker muscular dystrophy and daily life

“As a child with Becker muscular dystrophy, I could still enjoy riding my bike and playing with friends, but certain activities like jumping, climbing trees, or participating in running sports were challenging for me. However, I didn’t let these limitations bother me and learned to adapt at a young age, thoroughly enjoying my childhood. The real challenges surfaced in my late teens, experiencing frequent falls and needing several days to recover after pushing myself too far physically, especially during trips to amusement parks. Nowadays, I do my best to adapt to the challenges that come my way, as walking becomes more difficult. I’ve started using a mobility scooter for longer distances and a cane when required. Adapting to my changing needs is an ongoing part of my life with Becker muscular dystrophy.

Following dreams with Becker MD

Having this condition never stopped me from following my dreams. Throughout my life, I’ve pursued my passions, including writing and performing my songs. I’m proud to have published two articles online, featuring my list of the Top 10 vehicles for people with disabilities and reviewing a newly accessible vehicle. Unfortunately, a few years ago, I suffered a work-related injury, leading me to stop working. However, this didn’t deter me; instead, it inspired me to create the My Beckers Story blog, where I share my experiences of living with Becker muscular dystrophy. A few years later, I founded Laps for muscular dystrophy, where racing teams contribute to raising awareness and funds for muscular dystrophy charities. My journey has been about adapting and persisting, pursuing my passions and advocating for others in similar situations.”

My goal for WDAD

“For WDAD in 2023, it is my passion for raising awareness and understanding of the issues we face. As I really believe when people better understand our daily lives it can result in more support of our community. With the end result being more support of muscular dystrophy charities and of the important research & studies currently taking place. After all, the hope of many is seeing new treatments and the possibility of one day finding a cure.”

About the Breaking Barriers Theme

“To me, this year’s WDAD theme represents the determination of our community to support each other by working together to advance the cause of raising much-needed awareness and funds to help improve the lives of current and future generations. I think raising awareness is a great way of breaking barriers by making more people aware of the unique challenges we face. This resulting in more support and understanding.”

Why I’m joining as Becker Ambassador

The main reason I have decided to share my story is to show others they are not alone. To also show people that perseverance in life is so important. I’ve certainly faced many challenges in life. Some related to living with Becker Muscular Dystrophy others just the regular challenges of life. In my case I survived being bullied as a child as unfortunately the other children would make fun of the way I walk, call me names and once even spit on me. It was easy but I survived and still no child living with any form of Muscular Dystrophy should have to deal with being bullied. So, another hope of mine in raising awareness of BMD is that it makes more children aware of those living with MD so that future generations don’t have to deal with bullying. Another hope of mine is that reading my story helps parents better understand what it is like to live with BMD to hopefully show people we can live our lives to the fullest, have careers, start families and enjoy life.

Since the start of sharing my story, I’ve shared it openly and honestly by not shying away from addressing any issue affecting those with disabilities. Simply because I believe we can learn a lot from each other’s stories. That is why I often encourage others to start sharing their stories as it certainly can make a huge difference in people’s lives knowing they are not alone in their experiences. In a way letting them know we are all in this together with the same hope of one day seeing a cure for Muscular Dystrophy.”

Key Message

“So, let’s keep sharing our stories and raising awareness. Supporting WDAD is key in encouraging everyone. Even those outside our community to join us in the fight against Muscular Dystrophy.”

We are inviting you to follow Brad with his Becker story through his website and social media channels:

• Website: mybeckersstory.blogspot.com
• Instagram: @mybeckersstory
• Twitter: @mybeckersstory
• Facebook: facebook.com/mybeckersstory

Meet Bert Gooris, a 32-year-old from Belgium, living with Duchenne muscular dystrophy. This year, for World Duchenne Awareness Day (WDAD), he is one of our Duchenne Ambassadors. Over the next few weeks, Bert will be sharing his journey on breaking barriers in his personal life.

About Bert Gooris

“Hello, I’m Bert Gooris, a 32-year-old living with Duchenne muscular dystrophy in Leuven. Though I reside with my parents, I have my own space in the house, complete with a desk, room, and bathroom. I am a positive person and a dedicated family man. My 21-year-old sister also lives with us, and my older brother, who doesn’t have Duchenne, resides in Landen. It was a shock for me and my family to learn that my sister is a carrier of Duchenne muscular dystrophy, when she was 18 years old. Recently, I got a tattoo symbolizing the strong bond between me and my siblings. My parents have always supported my participation in various activities, like playing soccer and riding my bike. Although I faced bullying in school, I stood up for myself and continued my education smoothly, making some of the best memories during my college years.”

Daily Life with Duchenne

“Due to Duchenne, I had to readjust my ideas about what I wanted to become in the future. At home, when we talked about further studies, I wanted to attend culinary school to become a chef. However, it soon became clear that this would not be feasible in the long run due to the loss of function in my arm and leg. That’s why I decided to pursue something administrative because working with computers would remain possible for a longer time. Even in football, I had to admit that playing matches became too difficult, and eventually, I couldn’t participate in training sessions anymore, so I wouldn’t become a footballer.”

Duchenne Ambassador

“At school, I had to stand up for myself, explain that I had the disease, explain why I couldn’t run as fast, and why I was heavier than others. This made me a person who cannot tolerate injustice and will stand up for the weaker ones in society. As I grew older, I encountered more stories of injustice or shortcomings, and I became more aware that many people still don’t know about the disease despite the efforts made. That’s why I see it as my duty, as an adult living with Duchenne, to take on the role of ambassador now. I want to share my story with other individuals with Duchenne to encourage and support them. By doing so, I aim to create global awareness.”

Interpreting ‘Breaking Barriers’

“Well, it’s about time we dare to break those barriers and push for change. Change in inclusion, belonging, being informed about medication, assistive devices, the right to certain benefits, and the steps to follow during important milestones in life. It should be clear for everyone what rights they have and where to access relevant information. The time has come for people with disabilities to be fully accepted by society, and administrative processes for them should be significantly streamlined.”

Key Message

“It’s still a tough world for people with disabilities. We are just like any other individuals with the right to be fully included, 100%. We lead lives just like everyone else. If we collaborate and are truly heard, we can overcome many obstacles together.”

Future Plans

“In the future, everyone should be aware of these diseases. Efforts should be made to grant certain rights to people living with Duchenne and Becker, or any other conditions.”

We invite you to follow his journey by following him on social media.

• Facebook: Bert.Gooris
• Twitter: @UmbertosMission
• Instagram @Umbertos_Journey
• LinkedIn: Bert Gooris