Sam Hall has a doubly dangerous hobby. She was born with a rare skin condition known as epidermolysis bullosa or EB — and she spends her leisure time chasing tornadoes.
The 28-year-old, the world’s youngest tornado chaser, is from the United Kingdom and is the subject of a TLC special that will air Sunday, Jan. 15 at 10 p.m. Television crews followed Hall on an epic road trip across the United States in search of some of the most violent tornadoes on earth.
She is also challenged by EB, a genetically inherited disease that causes even the slightest friction to tear or blister the skin. She is constantly bundled in protective bandages, but she hasn’t let it stop her from pursuing her dangerous hobby.
“Some people compare us to butterflies, because our skin is supposed to be as fragile as a butterfly’s wing,” says Hall, whose day job is editor of the International Journal of Meterology. “But I think it would be fair to say that I’m not fragile, really.”
Epidermolysis bullosa affects about 1 in 50,000 Americans who are missing a protein that binds one layer of skin to another.
The disease is a spectrum of inherited skin disorders, whose hallmark is a blistering response to minor injuries, heat or even rubbing or scratching. It affects not only the skin, but anywhere in the body where tissues are typically held together more firmly: the eyelids, the upper esophagus, the inside of the mouth and the genital-rectal area.
There is no effective treatment, other than bandages and antibiotics to avoid trauma and infections.
Her mother, Fran Hall, recalls the day her daughter was born.
“It was just unbelievable, because nobody in the hospital knew what it was and when she was born they put her over into this cubicle and I could see right through her skin and see her veins and everything,” she said. “It was quite—frightening. We were in a daze, really, to be honest with you.”
Still, Hall is intoxicated by excitement and fear as she heads right into America’s Tornado Alley and some of the worst storms in recorded history – even with EB.
“The risks are definitely very strong winds gusts from this and hail and this road is not good, because if the back end slid round that corner this is getting quite muddy now,” says Hall in the documentary, as their truck nears the path of the tornado.
“It’s a nightmare to an extent, but it’s just something that you live with and you’ve just got to do it,” she says, referring to the EB. But, she adds, the tornado season is “only three weeks of my life. Yes, [EB] annoys me. Yes, it gets in the way. But what doesn’t? Everybody has got something in their life haven’t they that’s annoying to them. Just get on with it.”