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Vanessa Leinert, from Los Angeles, California, has been defying death since the day she turned three. Now that she’s 30, she opened up about living dangerously due to a condition called Epidermolysis bullosa. Those who are affected by this are sometimes called ‘butterfly children,’ the Daily Mail reports.
Due to her state, Leinert feels pain every time she would walk or get ready for the day. She had to spend at least three hours cleaning and dressing the wounds. Despite doctors saying that she wouldn’t survive past the age of three, Leinert graduated from college and works as a photographer.
Leinert 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.”
Leinert knew that one of these days she would have to start using a wheelchair. However, she tried to keep going through her life by challenging herself and her body. She even signed up for dance classes.
Leinert 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.”
She Wants To Have A Child. But Because Of Her Genetic Disorder, She Doesn’t Know How.
Leinert has always lived a difficult life, heightened by rude stares and bullying from other people. 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.”
When Leinert met her current boyfriend, Michael McNally, 30 years old, through work, her confidence has increased.
Leinert 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.”
Leinert serves as the president of the charity called United Survivor for EB Adults. The charity offers services to patients while making them more self-reliant. She said, “We encourage people that they can go to college, have jobs and have a normal life to whatever extent they can imagine.”
According to the NHS Choices and the National Organization for Rare Disorders, Epidermolysis bullosa is a group of genetic skin conditions in which the skin tends to be extremely fragile. The slightest friction could create blisters on the skin. There is no known cure for these conditions.
