Photographer whose skin blisters and FALLS OFF at the slightest touch defies the odds
Vanessa suffers from an excruciating condition that means that basic functions such as walking, getting dressed and using her hands causes blisters to form on her fragile skin
A BRAVE photographer whose skin falls off at the slightest touch has defied the doctors who told her she wouldn’t survive childhood.
Vanessa Leinert, 30, wasn't expected to make it past the age of three because of a rare condition that makes her skin as delicate as a butterfly wings.
She suffers from Epidermolysis Bullosa (EB), which is so rare it only affects 500,000 people worldwide.
The 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, become a professional photographer and now lives with her boyfriend of five years.
Every day she must clean and dress her wounds – a process that takes up to three hours.
But despite knowing that the smallest friction could cause her injury, Vanessa pursues her photography career, takes dance classes and even hopes 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.
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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 five to 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."
Vanessa now teaches dance classes and says music is the best pain reliever.
She explained that most EB sufferers eventually lose their ability to walk, but she is determined not to get to that stage.
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
In people with EB, any trauma or friction to the skin can cause tears and blisters.
Types:
There are three main types of the condition:
- Epidermolysis bullosa simplex: blistering occurs in the upper layer of the skin. This is the most common type of EB, accounting for 70 per cent of cases, and tends to be milder than the other types.
- Dystrophic epidermolysis bullosa: blistering occurs below the basement membrane zone in the upper part of the dermis. DEB accounts for around 25 per cent of cases.
- Junctional epidermolysis bullosa: blistering occurs at the junction between the epidermis and the dermis (lower layer of the skin) in a layer of skin known as the basement membrane zone. JEB accounts for around 5 per cent of cases and is usually considered the most severe type of EB.
Cause:
EB is caused by faulty genes. In most cases these are inherited from one or both parents but sometimes the fault occurs spontaneously.
It is a result of not enough collagen being produced in the skin.
Treatment:
There is no cure for EB, but treatments aim to relieve symptoms.
Most treatments can be done at home, such as popping blisters with a sterile needle, applying protective dressings and avoiding things that make the condition worse.
She said: "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’s music going and it’s 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 being in military. And every time I moved I had to re-introduce myself – I would explain EB in front of the whole class which made it so easier.
"There's always going to be people who make comments and stare but I learnt to ignore it."
Vanessa went on to study fine art photography and painting at Kutztown University of Pennsylvania.
Then, thanks to mentor Jamie Hartley, she learnt the tools to live by herself - a feat no one expected her to achieve.
Five years ago she met her boyfriend Michael McNally, 30, through her passion for photography and now the couple live together.
She said: "I feel like I've grown so much – in myself and in photography and I’ve 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."
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