Sosenko's right leg is slightly larger than her left, her back is uneven with fat deposits, and a plum-colored mark from enlarged blood vessels under the skin, called a port-wine stain, stretches from her torso to her right thigh. No one doctor can take care of these patients." "These patients used to be medical nomads. John Mulliken, co-director of Vascular Anomalies Center at Children's Hospital Boston. "There is tremendous confusion ," said Dr. Excessive bone growth can lead to amputation of the enlarged limb.īecause KTS falls between specialties - vascular, orthopedic and lymphatic - the disorder was often misdiagnosed and treated inappropriately. Symptoms can vary widely and, depending on the severity of the condition, can include pain, blood clots, seizures, blindness and mental retardation. "In terms of the medical issues, I never felt like I had them."
"It was always about my appearance, which is, in a lot of ways, fortunate," Sosenko said. If she dresses carefully and positions herself properly, Carla Sosenko, 32 from Brooklyn, N.Y., knows no one will be able to see any of the physical flaws that she works hard to conceal.īut, unlike the bumps and bulges that many people would like to hide, Sosenko's are the result of a rare congenital disorder called Klippel-Trenaunay Syndrome (KTS). I lose him for that amount of time, because he's not the same kid." "He'll only want fast food, and someone has to go get his food, and he's basically bedridden," she said.Īs disabling as it is to Eric, who had to miss a lot of school, his condition is also debilitating for Lori. Lori Haller always makes sure someone is with Eric during his periods of sleep. "The're cognitively impaired, they have an increased appetite and decreased inhibitions," said Silber. While experts don't think sufferers are in any danger during their sleep episodes, they probably shouldn't be alone. "They tend to become less active and want to sleep more, and they're kind of confused and in a cloud," said Schoumacher. There are usually signs that an episode is coming. The only way to really address the symptoms of Kleine-Levin Syndrome is to adapt to it. It tends to respond to lithium or depakote."
Rosalind Cartwright, professor emeritus at Rush University Medical Center and author of "The Twenty-Four Hour Mind." "Then, it's treated as if a mood stabilizer is needed. "If it's reversed naturally without medication and it's followed by three or four nights of complete insomnia, then it's a bipolar variant," said Dr.
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