Growing Up With ‘Butterfly Skin': Meet the Woman With Skin as Fragile as a Butterfly’s Wings
Credit: SWNS / Shirvani Naran
Meet the woman with skin as fragile as a butterfly's wings - which blisters at the slightest touch and means she spends four hours a DAY bathing and dressing her wounds.
Shirvani Naran, 35, was born with Recessive Dystrophic Epidermolysis Bullosa - an extremely rare and incurable skin condition - which leaves her with blisters and third-degree burn-like injuries at even the smallest contact.
She is unable to do daily tasks such as picking up items, opening bottles, chopping vegetables or even turning on a tap without breaking out in painful lesions and is forced to wrap herself up in bandages like a mummy on a daily basis.
The disease causes skin to blister both externally and internally and has even caused the mum-of-three’s eyes, inner ears, and throat to react.
Each evening, Shirvani spends four hours bathing and dressing her wounds from head-to-toe to keep her agonising condition under control.
Meet the woman with skin as fragile as a butterfly's wings - which blisters at the slightest touch and means she spends four hours a DAY bathing and dressing her wounds.
Shirvani Naran, 35, was born with Recessive Dystrophic Epidermolysis Bullosa - an extremely rare and incurable skin condition - which leaves her with blisters and third-degree burn-like injuries at even the smallest contact.
She is unable to do daily tasks such as picking up items, opening bottles, chopping vegetables or even turning on a tap without breaking out in painful lesions and is forced to wrap herself up in bandages like a mummy on a daily basis.
The disease causes skin to blister both externally and internally and has even caused the mum-of-three’s eyes, inner ears, and throat to react.
Each evening, Shirvani spends four hours bathing and dressing her wounds from head-to-toe to keep her agonising condition under control.
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LifestyleTranscript
00:00 just swallowing a sip of water or swallowing a piece of bread can cause a blister in my throat.
00:05 It's called epidermolysis bullosa. It's a very, very complex condition. The laser
00:17 skin flies against each other and it causes a blister. Or the skin itself will completely tear
00:22 off. So you'll get a complete open wound that's very much like a third degree burn.
00:28 I was born with it. I presented about two days after birth.
00:31 They started noticing that even just with handling me as a baby, I blistered. That's
00:38 when a dermatologist was called in. She was the one who made the diagnosis. They said to my parents,
00:43 you know, maximum of six months to live. There was no going to Google to say what exactly this
00:48 condition is. It was basically a chapter this long in a textbook. Childhood as a whole was just very
00:54 difficult. I was cautioned from such a young age, you know, don't run, be careful. I think the moment
00:59 that stuck in my mind as to when I realized something was wrong, I picked up an acorn,
01:04 my whole hand blistered. I just remember dropping the acorn because I was in so much pain and I
01:09 looked at my hand and it was covered in blood and it was covered in a blister. I remember going,
01:14 what is going on? The other kids are playing and we picking up stuff. Their skin is not like this.
01:20 Why did this happen to me? When I was older, I could articulate a little bit more and make choices
01:26 for myself. I just kind of let all my inhibitions go. I can either accept it and become a very
01:31 bitter person or I can choose to just go out and just be me. I was still very, very young when I
01:39 felt pregnant with Gabriella. I only realized that I was pregnant with her at 18 weeks. We had no
01:45 idea how I'd manage the pregnancy, if I'd carry full-time, you know, if she would be born with
01:50 the same condition. It was a horrible pregnancy. My skin was horrible. They ended up using a sticky
01:58 theater sheet that was placed over my tummy and my legs and my thighs. And when they pulled that
02:04 off, it just took all of the skin with it. So the lining was that my daughter was born and she was
02:09 born healthy. Everything that I didn't experience in my first pregnancy, I completely experienced
02:16 in the next two pregnancies. My skin was amazing. Completely different experience.
02:21 There's a lot that I can't do with the kids. It's like grasping his bottle. I don't have a
02:27 bottle that fits in my hand comfortably. And I wish we had products that were more adaptable.
02:32 And obviously we don't. Catching a ball with him, like I can't grasp. Push them on the swing. It's
02:37 all of these things that you, you know, you see moms doing every day. And these are things that
02:41 moms take for granted. Even if one of my kids were to have me, they'd be able to handle it because
02:50 I've been able to do it. They are so understanding about the things I go through and they don't hold
02:55 it against me. Them seeing what I go through on a daily basis makes them better people because they
03:00 are a lot kinder to their friends at school. They're a lot more sensitive when they see other
03:04 people with disabilities. I'm glad that I've been able to navigate, you know, being a wife and being
03:09 a mother and everything else that I, that I deal with. There's so many women who go through body
03:15 image issues on a daily basis. Look at me, look at what I go through and look at all of the things I
03:24 still do.