“You’re one in a million” is the cliched compliment of pop songs and Valentine’s Day cards. But if you live with one of the rarest medical conditions in the world, is there anything you wouldn’t do to know you’re not so unique — that there’s someone else out there just like you?
Wednesday night, TLC launches its newest series, “Two in a Million.”
In each episode, two people “with some of the world’s most unusual disorders” spend one week together “sharing hardships and incredible triumphs, visiting world-renowned doctors and finding answers to important questions,” TLC said in a press release.
The idea for the program came from Jonna McIver, a former intern at Raw TV, the production company that makes the show for TLC. McIver had made an award-winning student film about Owen Howkins, a British boy with Schwartz-Jampel syndrome who is featured in the first episode, and his dog, Haatchi.
“When we saw (the film) in the office, it made us all cry,” said Adam Hawkins, senior vice president of development at Raw. “We realized that it explored ideas about loneliness and isolation that we then worked up into a bigger series idea. We wondered, what if Owen had ever met anyone else with the same condition — and what it would be like if he did.”
Each of the six episodes features a different genetic disease: Schwartz-Jampel syndrome, ectodermal dysplasia, lamellar ichthyosis, osteogenesis imperfecta, Jarcho-Levin syndrome and Goldenhar syndrome.
The trailer for the series begins with a simple but profound message: “In a world of 7 billion people, these six have never met anyone like themselves.”
“It’s like I’m the only one and nobody understands it,” says Tiffany, 30, from New York.
“Sometimes, it can be lonely,” says Joshua, 11, from Texas.
“My wish is to meet someone that knows how I feel,” says Giovanni, 7, from Pennsylvania.
The orchestrated meetings are meaningful for them, and for their families. For most parents, it’s almost unfathomable to imagine caring for a child with such special needs — having no one to confide in who truly understands the pain, struggle and isolation of everyday life.
“We were so privileged that (these) people allowed us into their lives,” said Hawkins. “Many had been bullied and been through some pretty horrible medical experiences. They realized how special the series was, how intent we were on making it change lives — and they embraced that. We shared some pretty emotional times with these families and it changed all of us.”
A disease or disorder is defined as “rare” in the United States when it affects fewer than 200,000 Americans at any given time. According to the U.S. Food and Drug Administration, this includes better-known diseases such as cystic fibrosis, Lou Gehrig’s disease and Tourette syndrome, and less familiar conditions such as Job syndrome and acromegaly, or “gigantism.”
Some diseases have patient populations of fewer than 100. Collectively, however, they affect as many as 25 million Americans, according to the National Institutes of Health, and that makes the diseases — and finding treatments for them — a serious public health concern.
GeneMatcher, a new online database, helps connect clinicians caring for patients with gene mutations, which can be a root cause of some rare diseases.
Another thing that sets rare medical conditions apart from more common health problems is a substantial lack of funding. Large pharmaceutical corporations will almost always focus their research and development dollars on ailments afflicting larger numbers of people.
“There’s a rule of thumb for the companies who make new medicines,” said CNN chief medical correspondent Dr. Sanjay Gupta. “For every 10,000 compounds you patent, you can expect one success. That’s just one drug on the market. After, you’ve only got a few hundred potential customers. There’s no way to get a return on your investment.”
For the people appearing on the TLC show, knowing what they’re up against makes meeting someone else with a “one in a million” condition all the more special.
“The series took a very long time to make,” said Hawkins of Raw. “People were ill or wary of what tone the show might have. We had to reassure them that our show would be warm, celebratory, positive — and (offer) the chance of a lifetime to discover someone just like themselves.”
What does Hawkins hope the audience will take away from “Two in a Million”?
“That behind every person who may look different is a human being just like you — with the same hopes, fears and passions,” he said. “For people that feel lonely and isolated, take heart and reach out. There will be someone else like you out there. It would be great if parents could watch this with (their) children to make them aware of human differences, so they never contemplate bullying those who look different.”
