An Orange County man had to give up surfing after diagnosis for rare blood disorder - but continues to return to the beach to pursue passion for photography
"I take every day as a gift and I don't take life for granted," photographer Steven Ekenstam says.A rare blood disorder diagnosis changed an Orange County couple's lives forever, but they kept living."I take every day as a gift and I don't take life for granted," Ekenstam said, adding, "this is one way of staying connected to the sport and being able to live vicariously through other people's actions.
"We tried walking down here and it was like too much, so it's like, 'We have to find another way,'" Janet said."He just looked like a skeleton, skin and bones," Janet said. Six months into a nightmare of unknowns, doctors at Ronald Reagan UCLA Medical Center diagnosed Steven with Polyneuropathy Organomegaly Endocrinopathy Monoclonal-protein Skin changes Syndrome, known as POEMS Syndrome."The number of patients who get POEMS every year in the United States is numbered in the few hundred," Schiller said.Each letter of the name describes the signs and symptoms of the rare blood disorder which damages the nerves, organs, skin and other parts of the body.
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