Teenager With Butterfly Skin Inspires Others | BORN DIFFERENT


JOHN HUDSON DILGEN: EB has definitely affected my everyday life. I basically need help with everything. JOHN HUDSON DILGEN: Hi, my name is John Hudson Dilgen, I was born July 20th 2002, and I’m 15 and half years old. NICOLE COLLINS: I’m here. You ready? JOHN HUDSON DILGEN: Yeah, just give me a second. NICOLE COLLINS: All right, let me go get everything set up. JOHN HUDSON DILGEN: This condition that I have we refer to as EB but is more known as Epidermolysis Bullosa. I was born with it, I’m missing a part of my body that’s called Collagen seven, it’s basically what holds the skin to your body. JOHN HUDSON DILGEN: When most people you know, bump into someone nothing really happens but bumping into someone for me, my skin just shears right off. Any type of force or any friction especially when I scratch and I get itchy causes a big wound. My whole body is covered in bandages. FAYE DILGEN: John Hudson takes a variety of medications twice a day and so I have a checklist of everything he takes this morning, which include probiotics, sodium because his sodium is low. So this was the Neurontin for the nerve pain and 8 mls of that, and then I’m also going to make for later extra doses of Dilaudid because he is going to want them after the bath and then they’re ready for him. He takes Dilaudid for pain every four hours during the day. NICOLE COLLINS: So the plans right now include making a new bathroom for John Hudson with a new tub. FAYE DILGEN: We’re hoping that we can make it a reality for him. NICOLE COLLINS: Ready for your bath. JOHN HUDSON DILGEN: Yeah. NICOLE COLLINS: I would say about 95% of his body is covered in open wounds. John Hudson needs treatment everyday round the clock. JOHN HUDSON DILGEN: Because I didn’t stretch my fingers enough, my fingers are kind of fused into these and I can’t straighten them. Also my hands are very bent. They are basically all fused together and I can’t use much of it. NICOLE COLLINS: The tub that he has is a special tub. It has MicroSilk, it’s like little bubbles, research has shown that it increases tissue growth. JOHN DILGEN: When he has to take a bath, he has, he knows it’s going to be painful, and yet he knows he needs to do it. JOHN HUDSON DILGEN: When I take the pain, pain is just, it’s horrible. I mean, JOHN HUDSON DILGEN: I hate having to get in that water. JOHN HUDSON DILGEN: But you know, I know it’s going to help my skin so I have to get in there. NICOLE COLLINS: I’m, I’m like the bad one because I give him his bath for the day but he needs it. NICOLE COLLINS: I didn’t think I was going to be emotional, sorry. I get emotional when I talk about it but he’s, yeah; he’s in a lot of pain. JOHN DILGEN: It was pretty devastating in the beginning. JOHN DILGEN: We got educated very quickly on, what it, what this was all about. JOHN DILGEN: It’s, every time I think about it, it still upsets me. JOHN HUDSON DILGEN: You know it’s, it’s not really just physical-ness of it. It’s more as well, which is so stressful. Sometimes I make plans with my friends and once the bath is done, I’m really just stuck up here all day because I’m in so much pain. It’s a struggle but I got to hope that it’ll be better eventually. JOHN DILGEN: John waits whole year for spring and summer so we can get root beer floats from the ice-cream truck. JOHN DILGEN: Looks good, doesn’t it? NICOLE COLLINS: John Hudson’s personality is amazing. For someone in his situation, even if he is in pain, he will still try to you know, be positive. He’s like, a kind soul. JOHN HUDSON DILGEN: When I got into motivational speaking, at first I didn’t even think of it as that, I, to me it was talking about the truth. I usually get to meet a lot of people with EB because we hold a lot of events to raise money for research. I’m not the only kid with EB out there. I got to tell the truth about what’s going on with EB kids and when I did that it was getting the word out to people. NICOLE COLLINS: John Hudson has a very outgoing personality. He is very friendly, he is very funny. JOHN DILGEN: He, he’d just, he makes me laugh continuously. JOHN HUDSON DILGEN: Even though I have this condition, I hope that someday I can grow up and be like my parents because my dad’s a teacher and my mom is a therapist. That’s why I want to be able to like, do something where you know, I’m helping people; sounds good to me.

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