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PHILADELPHIA, PA -Back on February 28th, which is ironically, “Rare Disease Day,” Jordan Flake says she and her 1-year-old son, Jackson, were kicked off an American Airlines flight because of their rare skin disease.

Flake told PHL17, “I feel like it’s the most I’ve ever been judged or discriminated against.”

Flake says she and her son were traveling back home 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, Flake says an American Airlines employee, who was specifically called on board, approached Flake and her son and said, “‘What’s your rash? Is it ok 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.

Flake explained of the AA employee, “He 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 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 Jordan 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.

Moureen Wenik is the Executive Director of FIRST and told PHL17, “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.”

Wenik says she and her team at FIRST say they hear similar stories of discrimination often. Wenik said, “We hear it all the time. People are asked to leave restaurants, swimming pools, in schools, in a store, someone trying on clothing.” Wenik continued, “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.”

FIRST works to educate, inspire and connect families around the world who are affected by icthyosis. Wenik said, “I feel angry against American. but we want to educate them and help them to rethink how they treat their passengers.”

According to, a consumer advocacy site, Jordan and Jackson’s experience might sound extreme, but it was perfectly legal. Flight attendants are empowered to remove passengers if they think they pose a danger to the other passengers.

However, Flake says she was never specifically told why she was being removed.

Flake told PHL17, “They thought I was having an allergic reaction, or if they thought I was contagious…they never explained to me why they thought I had a rash.”

Flake says she has spoken to an attorney about what happened and is still deciding about pursuing legal action against the airline.

As for how to avoid this going forward, Flake suggested a stationary doctor in airports who could evaluate a passenger, or a situation like this, and explained to concerned flight crews, or other passengers, what is going on.

Flake also posed the idea of a more concrete rule for documentation, if a passenger has a visible condition like ichthyosis. Flake said, “Honestly, I would really like a black-and-white policy put into place where you either have to carry documentation or you don’t.”

American Airlines denied PHL17’s request for an interview but did release a statement saying, “Our goal at American Airlines is to create a welcoming environment for all of our customers. We sincerely apologize to Ms. Flake and her son for the experience they had last Thursday, and our team has begun an investigation into the matter. Our customer relations team has already spoken to her directly and upgraded them on their American flights. We also refunded the cost of their trip as well.”

PHL17 reporter, Matt Alba, and his older sister Brittany Alba, also have ichthyosis, and have been members of FIRST since early childhood. Upon learning of what happened to the Flake family, Matt decided to share his own story on PHL17 Morning News.