By Sarah Francis

A brave survivor of a rare condition that causes her skin to fall off has defied doctors who said she’d never live through childhood.

Vanessa Leinert, 30, wasn’t expected to make it past the age of three because of Epidermolysis Bullosa, which is so rare it only affects 500,000 people worldwide.


Her excruciating condition means that basic functions such as walking, getting dressed and using her hands causes blisters to form on her fragile skin.

Many EB survivors aren’t able to live independently, but Vanessa has graduated university, became a professional photographer and now lives with her boyfriend of five years.

Everyday she must clean and dress her wounds – a process that takes three hours.

But even knowing that the smallest friction could cause her injury, Vanessa pursue her photography career, takes dance classes and even hope to one day have kids.

Now, as the president of charity United Survivors of Eb (useb) for other patients, she is encouraging all EB survivors to also live their lives to the fullest.


Vanessa, from Los Angeles, California, said: “I have the most severe type which makes it really difficult to get medical treatment or go to school or live independently.

“My whole life, since I was born, they said I wasn’t going to make it past three. Then it was five, then 10, and so on.

“Now I am 30 years old. I’ve been told I might not make it but I keep pushing it further and further.

“I wasn’t able to eat orally from the age of 5-19 and they told me I would never eat. But magically around 19, I was just able to eat again.

“I was told I couldn’t do photography because of the chemicals, but I just find ways and use different tools.

“I didn’t think I could date, or have a boyfriend.

“My mum tried to prepare me. She explained not everyone would be as accepting as family, it’s difficult to deal with wounds – she tried to encourage but also warn me.

“But I’ve been with my boyfriend for five years and he’s taught me so much.”

And the super star doesn’t stop there; she is also taking dance classes and claims music is the best pain reliever.

She said: “Most EB patients lose their ability to walk eventually.


“I want to avoid that as much as possible and when I do start to use a wheelchair, I want to know that I did as much as possible before.

“It’s important to continue movement. My boyfriend and I like going out to clubs.

“When there music going and its loud, it’s the strongest medication and it’s a complete distraction.

“Sometimes the wounds are overwhelming and the pain but I know what I’m capable of.”

Growing up Vanessa’s doting parents pushed for their daughter to have a normal life.

Vanessa said: “My mum had a hard time putting me into a free school, but she fought to keep me in a public system.

“Both my parents wanted me to be normal and they had high standards, they wanted me to get top grades and wanted me to complete college. Now I am grateful that my parents pushed me.

“I did struggle with school. Not everyone was kind.

“I had to move 12 times due to my dad been in military. And every time I moved I had to re-introduce my self – I would explain EB in front of the whole class which made it so easier.

“But I definitely did retreat. I focused on painting and reading.

“When we stopped moving for a while, I had to stop withdrawing from people.


“There’s always going to be people who make comments and stare but I learnt to ignore it.”

She went on to study Fine Art Photography and Painting at Kutztown University of Pennsylvania.

Then, through a mentor, Jamie Hartley, she learnt the tools to live by herself – a feat no one excepted her to achieve.

Vanessa said: “Jamie helped me to realise what I needed to do and could do on my own.

“She showed me the special tools and the organisation that provide help such as applying my bandages.”

Five years ago she met her boyfriend Michael McNally, 30, through her photography and now the couple live together.


She said: “I’ve feel like I’ve grown so much – in myself and photographer and learned so much stuff.

“We’re better off together, bouncing ideas off each other.

“We would love to have children and get married one day but our careers are our goals and “babies” right now.

“Eventually we would like to adopt since it would be easier on me physically.”

Vanessa is also the president of a charity for adult survivors of EB called United Survivor for EB Adults, which encourages patients to be self-reliant and offers assistance and services.

She said: “My mentor, Jamie Hartley was the founder, she passed away three years ago. I was voted in so now I’m trying to revamp and get everything on board with Jamie’s vision.

“We encourage people they can go to college, have jobs, and have a normal life to whatever extent they can imagine.”