Woman Has Skin as FRAGILE as a Butterfly’s WINGS

Credit: SWNS / Shirvani Naran   "Even just swallowing water can cause blisters on my skin."

Transcript

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.