A man with a severe skin condition that has ravaged his face has revealed how cruel strangers are ‘scared’ of him.
Dean Clifford, 38, from Queensland, has defied doctors who warned he wouldn’t survive past the age of five because he has the most serious form of Epidermolysis Bullosa.
But, despite overcoming the odds to become the oldest living survivor in the world, he has faced years of ridicule for his appearance.
The rare, genetic condition causes him to have incredibly fragile skin, which blisters frequently and takes much longer than usual to heal itself.
But, despite the challenges he faces, he has transformed himself from a physically weak and sick child to a bodybuilder and motivational speaker.
Mr Clifford, who also works as a business and marketing officer, has today opened up about his condition, which strikes one in 50,000 people, for the first time.
He said: ‘The way I describe it to people I meet is my skin is basically as strong as tissue paper or strong as butterfly wings.
Dean Clifford, from Queensland, has become the oldest living survivor in the world of the most serious form of Epidermolysis Bullosa
‘So the slightest little movement will create a blister or a tear in my skin that will become ulcerated and become a nightmare to deal with.
‘It’s sort of equivalent to living with third degree burns every single day.’
Mr Clifford has refused to let the condition bring him down and has always adhered to his personal philosophy – ‘never admit defeat’.
He explained how he uses his ordeal – which sees him undergo a three-and-a-half hour routine every morning – as a ‘learning experience’ to better himself.
Every morning he soaks his bandages off in the bath, before treating any new skin issues and re-applying the bandages.
Simple tasks such as typing on keyboards or handshakes can cause his skin to weaken and blister.
This means he and his mother are constantly treating new skin problems during this protracted morning preparation.
‘If I stay true to myself, I stay grounded,’ he said. ‘And if I stay true to what’s important to me then I can always see a positive spin to just about anything.’
The rare, genetic condition causes him to have incredibly fragile skin, which blisters frequently and takes much longer than usual to heal itself
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis bullosa (EB) is a general term used to describe a group of rare, inherited disorders that cause the skin to become very fragile.
Any trauma or friction causes patients’ skin to blister.
It affects around one in every 50,000 people worldwide.
Around 40 per cent of sufferers do not survive the first year and most do not live beyond five years old.
The three main types of the disorder include:
- EB simplex – where blistering occurs in the upper layer of skin. This affects 70 per cent of sufferers
- Dystrophic EB – where blistering occurs in the upper layer beneath the skin’s surface, which affects 25 per cent of patients
- Junctional EB – where blistering occurs in the lower layer of the inner skin, which is usually the most severe form of the condition
Most cases are obvious from birth.
EB occurs due to faulty genes, which can be inherited or occur spontaneously.
There is no cure.
Treatment focuses on relieving pain and treating complications, such as infections or skin cancer.
Source: NHS Choices and the National Organization for Rare Disorders
His parents, Jenny and Peter, began noticing blisters appearing on their son soon after his birth.
But they just assumed he was allergic to the brand of baby wash they were using.
His condition worsened as more blisters formed in the following months – eventually leading doctors to diagnose him with EB.
Mrs Clifford said: ‘The doctors painted a very bleak picture. We thought maybe two years, three years we’d have.
‘We didn’t really think we would have him for a long time, but we were certainly willing to take up the challenge and keep him as well as we possibly could.’
Mr Clifford added that his own upbringing difficult at times, with other children often being too scared to be around him due to the severity of his facial blisters.
‘I always knew that I was very different,’ he said.
‘I knew by people in the community being scared to be around me, or when I’d go to the cities or go outside of my familiar environment the community would be scared to be around me.’
He added: ‘Sometimes people will stop me in the street and pray with me, or come up and offer a miracle medical treatment that they have just read about on the internet.
‘Kids to this day are still quite scared and concerned, which is fine, I can deal with kids and get them to understand pretty quickly, and I can deal with adults, and get adults to understand pretty quickly.
‘If people want to get to know the person behind the skin condition then I’m more than happy to share my story.’
But, despite the challenges he faces, he has transformed himself from a physically weak and sick child to a bodybuilder and motivational speaker (pictured as a child)
Mr Clifford, who also works as a business and marketing officer, has today opened up about his condition, which strikes one in 50,000 people, for the first time
None of this has stopped him from confronting his almost-constant pain to become a weightlifting marvel through diligent training and perseverance.
It began back in 2006 when Mr Clifford and his close friend and New Zealand All Black, Brad Thorn, began thinking of ways for him to improve his physical health.
He started weightlifting just the bar, before adding more weight and wowing his friends and family by bench-pressing 60kg by the end of his first session.
Mrs Clifford recalled when he first started his new hobby.
She said: ‘When Dean stared weight lifting it was a little bit like “why put yourself under this pressure?” But when Dean wants to do something, he’ll do it.
‘It has had consequences for his hands. But it’s also made him who he is now, and it’s a huge achievement.
‘Who would have ever thought this little frail young man would become the man he is today.’
Weight training is a practice Mr Clifford has kept up, becoming strong enough to lift weights of up to 150kg, as well as perform push-ups, sit-ups, and other exercises many others without his debilitating condition would find difficult.
He said: ‘There’s nobody that I am aware of that is lifting the kind of weights that I lift… and there’s not many people in the world, whether they’ve got EB or they have got a normal healthy body, that is able to train with me on a level or keep up with me.’
It began back in 2006 when Mr Clifford and his close friend and New Zealand All Black, Brad Thorn, began thinking of ways for him to improve his physical health
His parents, Jenny and Peter (pictured), began noticing blisters appearing on their son soon after his birth. But they just assumed he was allergic to the brand of baby wash they were using
Mr Clifford has refused to let the condition bring him down and has always adhered to his personal philosophy – ‘never admit defeat’
Every morning he soaks his bandages off in the bath, before treating any new skin issues and re-applying the bandages. Simple tasks such as typing on keyboards or handshakes can cause his skin to weaken and blister
Friend, Aaron Whitchurch, who helps Mr Clifford train, added: ‘I think weightlifting means quite a bit to Dean. It’s given him a massive focus and drive in his life. I just think it’s amazing what he has been able to do to.’
This commitment to overcoming the odds has equipped him with the knowledge and experience needed to inspire others through his motivational speaking events.
The bodybuilder has become a fixture on the speech circuit, sharing his personal philosophy at numerous Australian companies and organisations, including primary schools, the Australian Federal Police, and even in one-on-one meetings with government departments and Prime Ministers.
‘The message I’m always trying to spread is basically to be true to yourself and find the thing that makes your life special,’ he explained.
‘Whether it’s weightlifting or sharing my unique life story, or whether it’s trying to inspire the next generation in the community.
‘People can hopefully look past my skin condition to see somebody pretty amazing and achieving some phenomenal things in his own life.’
These appearances have naturally brought Mr Clifford some significant notoriety, which recently culminated in him being selected as a runner in the Queens Baton Relay in the upcoming 2018 Commonwealth Games.
Mr Clifford, who previously carried the Olympic torch through Kingaroy in 2000, said: ‘Having achieved so much in these 18 years, since the 2000 Olympic torch run, I think it will be a bit more of an emotional time and sort of a reflecting time.’
Having accomplished so many unexpected things, Mr Clifford now has his sights set on maintaining his health and continuing to defy his original prognosis.
He said: ‘It’s been an amazing thing to be thinking long term and thinking about the prospect of living independently and sort of setting myself up for what could end up being a very long life.
‘Which would be amazing to consider for somebody with a life expectancy of no more than two to five years of age.’
His commitment to overcoming the odds has equipped him with the knowledge and experience needed to inspire others through his motivational speaking events