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
00:00Even just swallowing a sip of water or swallowing a piece of bread can cause a blister in my throat.
00:12It's called epidermolysis bullosa. It's a very, very complex condition.
00:17The layers of skin flies against each other and it causes a blister. All the skin itself
00:21will completely tear off, so you'll get a complete open wound that's very much like a third degree burn.
00:26I was born with it. I presented about two days after birth.
00:34They started noticing that even just with handling me as a baby, I blistered. That's when
00:38a dermatologist was called in. She was the one who made the diagnosis. They said to my parents,
00:43you know, maximum of six months to live. There was no going to Google to say what exactly this
00:48condition is. It was basically a chapter this long in a textbook. Childhood as a whole was just very
00:54difficult. I was cautioned from such a young age, you know, don't run, be careful. I think the moment
01:00that stuck in my mind as to when I realized something was wrong, I picked up an acorn,
01:05my whole hand blistered. I just remember dropping the acorn because I was in so much pain and I
01:10looked at my hand and it was covered in blood and it was covered in a blister. I remember going,
01:14what is going on? The other kids are playing and we picking up stuff. Their skin is not like this.
01:20Why did this happen to me? When I was older, I could articulate a little bit more and make
01:26choices for myself. I just kind of let all my inhibitions go. I can either accept it and
01:30become a very bitter person or I can choose to just go out and just be me.
01:37I was still very, very young when I felt pregnant with Gabriella. I only realized that I was pregnant
01:43with her at 18 weeks. We had no idea how I'd manage the pregnancy, if I'd carry full term,
01:49if she would be born with the same condition. It was a horrible pregnancy. My skin was horrible.
01:56They ended up using a sticky theater sheet that was placed over my tummy and my legs and my thighs.
02:02And when they pulled that off, it just took all of the skin with it. Silver lining was that my
02:08daughter was born and she was born healthy. Everything that I didn't experience in my
02:13first pregnancy, I completely experienced in the next two pregnancies. My skin was amazing,
02:20completely different experience. There's a lot that I can't do with the kids. It's like
02:25grasping his bottle. I don't have a bottle that fits in my hand comfortably and I wish we had
02:31products that were more adaptable and obviously we don't. Catching a ball with him, like I can't
02:35grasp. Push them on the swing. It's all of these things that you, you know, you see moms doing
02:40every day and these are things that moms take for granted.
02:46Even if one of my kids were to have me, they'd be able to handle it because I've been able to do it.
02:51They are so understanding about the things I go through and they don't hold it against me.
02:56Them seeing what I go through on a daily basis makes them better people because they are
03:00a lot kinder to their friends at school. They're a lot more sensitive when they see other people
03:05with disabilities. I'm glad that I've been able to navigate, you know, being a wife and being a
03:10mother and everything else that I, that I deal with. There's so many women who go through
03:15body image issues on a daily basis. Look at me, look at what I go through and
03:23look at all of the things I still do.