“My Skin Rips With Every Movement” | Listen Up | ABC Science

Summary

Dean, a 43-year-old man living with the rare genetic condition Epidermolysis Bullosa (EB), shares his inspiring journey of overcoming severe physical challenges. Despite doctors predicting a short life expectancy and intense pain, he defied expectations, including walking with the Olympic torch and becoming one of the strongest powerlifters in the world. Through his story, Dean highlights his resilience, his struggle with societal perceptions of disability, and his passion for raising awareness about EB. Now a motivational speaker, he continues to inspire others by sharing his story of perseverance and strength.

Takeaways

• 😀 Dean lives with Epidermolysis Bullosa (EB), a rare genetic skin condition that causes severe skin blistering and pain.
• 😀 Despite doctors predicting a life expectancy of just two to five years, Dean has defied expectations and lived far beyond that.
• 😀 Dean developed a strong mental fortitude that helps him manage the constant pain caused by his condition.
• 😀 At one point, Dean was wheelchair-bound, needed tube feeding, and struggled with the limitations of his condition during his youth.
• 😀 He was selected to carry the Olympic torch in 2000 and worked hard for six months to train for it, even though it seemed impossible.
• 😀 The day he walked with the Olympic torch, Dean experienced a rare, pain-free moment—making it one of the most magical experiences of his life.
• 😀 Dean moved to Brisbane to live independently but faced discrimination and challenges due to negative preconceived notions about his disability.
• 😀 In a low point, Dean questioned his future, but he soon found new strength when he began working out at a gym and became determined to lift his body weight.
• 😀 By lifting 150 kilos (over double his body weight), Dean became known as one of the strongest powerlifters in his community.
• 😀 Dean’s story is an inspiration to others, and he now works as a motivational speaker, advocating for awareness about EB and inspiring others to overcome their own challenges.
• 😀 Through his journey, Dean has shown that no matter the physical limitations, mental strength and perseverance can lead to remarkable achievements and a meaningful life.

Q & A

What is Epidermolysis Bullosa (EB)?

Epidermolysis Bullosa (EB) is a rare genetic skin condition that causes the skin to be extremely fragile. The skin lacks the binding anchors that hold its layers together, making it prone to blisters and severe wounds from even minor friction or movement.

How does the condition affect Dean's daily life?

Dean’s daily life is deeply affected by EB, as even simple movements can cause painful friction burns. His skin is constantly at risk of blistering, and he experiences excruciating pain, especially when he takes a misstep or makes the wrong movement.

What was Dean's life expectancy prognosis when he was diagnosed with EB?

Dean's doctors initially gave him a life expectancy of only 2 to 5 years due to the severity of his condition. They indicated that the older he got, the more painful and debilitating life would become.

How did Dean defy the doctors' expectations about his survival?

Despite being told he wouldn't live long, Dean not only survived well beyond his expected life expectancy but also achieved remarkable milestones, including walking with the Olympic torch and becoming one of the strongest powerlifters in his field.

What was the significance of Dean carrying the Olympic torch?

Carrying the Olympic torch was a monumental moment for Dean, as it marked the first time he was able to walk without pain. It was a moment of personal triumph and symbolic victory over the challenges posed by EB.

What did Dean do to prepare for the Olympic torch relay, despite being wheelchair-bound?

Dean underwent intense physical therapy and used a treadmill to build strength, eventually working up to the point where he could walk on his own. His determination led him to walk with the Olympic torch even though doctors and his close friends initially doubted it would be possible.

How did Dean feel when he realized he could walk with the Olympic torch?

Dean felt overwhelmed with emotion and joy. The day was described as magical, as it marked the first time he had walked pain-free. It was an unforgettable experience that left a lasting impact on him.

What challenges did Dean face when trying to live independently in Brisbane?

When Dean moved to Brisbane to live independently, he faced challenges due to the misconceptions and prejudices people had about him and his disability. He struggled to find work and was caught in a difficult situation, being seen as too disabled to live independently, yet too independent to qualify for support services.

How did Dean's life change after his experience in the gym?

Dean’s experience in the gym was transformative. He discovered his strength when he managed to lift his own body weight on the bench press. This led him to become a strong powerlifter, breaking records and gaining recognition for his abilities.

What is Dean's current profession, and how does he contribute to the community?

Dean is currently a motivational speaker, where he shares his story and inspires others. He speaks to a wide range of audiences, from schoolchildren dealing with bullying to corporate leaders. He is also passionate about raising awareness for Epidermolysis Bullosa (EB) in Australia.