A hug could kill him - but this 15-year-old refuses to give in: Teenager with rare disease that causes his skin to rip at the slightest touch is inspiring people with motivational speaking John, 15, was born with Epidermolysis bullosa which affects only one in every 50,000 children in the US EB sufferers are known as having 'butterfly skin' because their skin is so fragile it could rip with one touch Around 95 percent of John's body is covered in open wounds Though it's difficult to exert himself, John is dying his disease to raise awareness Despite being born with an incredibly rare condition that causes his skin to blister and tear with the slightest touch – John Hudson Dilgen is inspiring people with his motivational speaking. John, 15, was born with Epidermolysis bullosa, a condition that leaves him in constant pain and affects only one in every 50,000 children in the United States. On a daily basis, John endures the excruciating ordeal of having every inch of his raw, blistering skin wrapped in bandages to lower the risk of disastrous consequences from something as simple as a hug or a pat on the back. Around 95 percent of John's body is covered in open wounds. But in defiance of the excruciating pain and discomfort, John, who lives in Staten Island, New York, tries his best to help other children with the condition by raising awareness online and organizing charitable events. John Hudson Dilgen who has the rare genetic disease Epidermolysis Bullosa (EB) with his parents John and Faye at home in Staten Island, New York Last year, John and his family successfully raised the money to buy him a brand new 'special' bathtub (pictured) that has MicroSilk – something that researchers have shown improves the growth of tissue. But it's excruciatingly painful When he has to take a bath, he knows it's going to be painful and yet he knows he needs to do it 'When I got into motivational speaking, at first, I didn't think of it as that,' John told Barcroft TV. 'To me, it was just about talking the truth. I felt like I had to tell the truth about kids who live with EB. 'It's more important than anything else, to let other people know what's really taking place when you live with this condition. 'EB has definitely affected my whole life. I basically need help with everything. 'Any type of force or any friction to my skin causes a big wound.' John takes a variety of medications twice a day, which includes probiotics and sodium. EB sufferers - only one in 50,000 of kids in the US - are known as having 'butterfly skin' because their skin is so fragile it could rip with one touch. John has to be wrapped in bandages all the time to prevent rips John's nurse Nicole Collins, who helps to bathe John and treat his wounds every day, said she gets emotional speaking about him because he endures such pain but he's a fighter He requires 24-hour care from his mother and father, Faye and John Dilgen, and his nurse, Nicole Collins. 'I have a checklist of everything that John takes each morning,' Faye said. 'He has to have Dilaudid every four hours during the day for the pain.' John's father, John Dilgen, added: 'We got educated very quickly on what this was all about. 'It was pretty devastating in the beginning. 'Even now, when he has to take a bath, he knows it's going to be painful and yet he knows he needs to do it. 'Every time I think about it, it still upsets me.' Just last year, John and his family successfully raised the money to buy him a brand new 'special' bathtub that has MicroSilk – something that researchers have shown improves the growth of tissue. The MicroSilk bath adds up to 70 percent more oxygen into the water than regular tap water, creating little bubbles. To most, it sounds good - comforting, even. But for John, even something that is designed to nurture his skin is unbelievably painful. 'When I take a bath, the pain is just horrible,' he explains. 'I mean, I hate having to get in the water. But I know it's going to help my skin, so I have to just do it.' His nurse Nicole Collins, who helps to bathe John and treat his wounds every day, said it never gets easier. 'I feel like the bad one, because I give him his bath every day. But he needs it,' she said. 'I get emotional when I talk about John, because he's in a lot of pain.' 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 Nothing holding him back: John is active with many hobbies, refusing to let EB overtake him. Here, he's pictured with his knife collection and gifted Purple Heart with his mother Faye John's father, John (right) said: 'We got educated very quickly on what this was all about. It was pretty devastating in the beginning' She adds, tearing up: 'John's personality is amazing for someone in his situation. 'Even if he is in pain, he'll still try to be positive. He's got a really kind soul.' With the help of The Stephen Siiler Tunnel to Tower Foundation, a charity that provides specialized homes for people with disabilities, the family has now got a new home which has been adapted for John's needs - including a treatment table, elevator and ramp enabling him to get around easier. Despite the terrible hardship John is faced with every single day of his life, he still remains the shining light of his family. Despite the terrible hardship John is faced with every single day of his life, he still remains the shining light of his family Faye said: 'John has a very outgoing personality. He is very friendly, he is very funny.' And even now, John remains determined to carry on raising awareness to other children around the world who live with EB. John said: 'I usually get to meet a lot of people with EB because we hold a lot of events to raise money for research. 'I get to tell the truth about what's going on with EB children. It helps to get the word out to people. 'And I usually get a pretty positive response from people. 'Even though I have this condition, I hope that someday I can grow up and be like my parents. I want to do something where I am helping other people.' Source
