PHILADELPHIA - A woman is speaking up after she and her 1-year-old son were kicked off an American Airlines flight last month because of their rare skin disease.
February 28 is Rare Disease Day, a day of recognition for people battling less common illnesses. But, rather than feeling respected or supported, Jordan Flake said she and her son, Jackson, were singled out for a skin condition they both have.
“I feel like it’s the most I’ve ever been judged or discriminated against,” Flake said.
Flake said she and her son were traveling back to South Carolina after visiting her husband in Texas before he left for his military deployment.
After settling into their seats, comfortable and about to take off, an American Airlines employee, who was specifically called on board, approached Flake and her son and said “‘What’s your rash? Is it okay that you fly?’ And, I said, ‘Well, I don’t have a rash. I have ichthyosis.’”
According to the Foundation for Ichthyosis & Related Skin Types (FIRST), ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix "ichthy" is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of ichthyosis.
“He [the employee] went back to the front of the plane, and then he came back and he said, ‘Sorry, we are not going to let you fly,’” Flake said.
Flake said, as she was walking off the plane, she heard a flight attendant say, “Well, she doesn’t have papers or a note from a doctor, so she can’t fly.”
According to Flake, American Airlines employees forced her and her son off the flight, made arrangements for a hotel for a night and then put them on another flight home a day later.
Unfortunately, all of the family’s luggage never made it off the first plane, forcing Flake to go buy new lotions and creams for her and her son.
The FIRST Skin Foundation is located in Colmar, Pennsylvania about 20 miles outside of Philadelphia. FIRST’s mission is to improve lives and seek cures for those affected by ichthyosis and related skin types.
“The feeling of humiliation, the emotional toll that it takes not only on Jordan but on everyone and, for Jordan herself, this is lifelong now. She will never forget that she had been asked to leave a plane,” said Moureen Wenik, executive director of FIRST.
Wenik said she and her team at FIRST said they hear similar stories of discrimination often.
“We hear it all the time. People are asked to leave restaurants, swimming pools, in schools, in a store, someone trying on clothing," she said. “I was really heartbroken for her and for the entire community because what this meant was other people in the community are now feeling, ‘Well, what if this happens to me? Does this mean I need a medical note?’ It really opened up a larger story.”