A survivor of a rare condition that causes her skin to fall off has defied doctors who said she’d never survive childhood.
Vanessa Leinert, 30, from Los Angeles, wasn’t expected to make it past the age of three after being diagnosed with Epidermolysis Bullosa (EB), a skin condition whose sufferers are often called ‘butterfly children’ due to their fragile skin.The excruciating condition means walking, getting dressed and even using your hands causes Vanessa to break out in blisters.
Every day she spends three hours cleaning and dressing her wounds.
Defying the odds, Vanessa has graduated from university, become a professional photographer and hopes to one day have children with her boyfriend of five years.Vanessa said: ‘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 to 19. 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.’But I’ve been with my boyfriend for five years and he’s taught me so much.’
Although Vanessa will likely one day be confined to a wheelchair, she remains positive and even takes dance classes.
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 is music going and its loud, it’s the strongest medication and it’s a complete distraction.’Understandably, life hasn’t always been easy for Vanessa. who had to learn to deal with taunts and stares from others.
She said: ‘I did struggle with school. Not everyone was kind.’There’s always going to be people who make comments and stare but I learnt to ignore it.’Meeting her boyfriend Michael McNally, 30, through work has also boosted Vanessa’s confidence.
She said: ‘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 the charity United Survivor for EB Adults, which encourages patients to be self-reliant and offers assistance and services.
She said: We encourage people that they can go to college, have jobs and have a normal life to whatever extent they can imagine.’
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
Any trauma or friction makes the skin blister
EB affects around one in every 50,000 people worldwide
There is no cure, with treatment focusing on relieving pain and treating complications, such as infections
Source: NHS Choices and the National Organization for Rare Disorders