What is Klippel-Trenaunay Syndrome? Brooklyn writer Carla Sosenko shares facts about condition.Carla Sosenko, a freelance writer and full-time copy editor at Bauer Publishing who lives in Brooklyn, has revealed in the new issue of Marie Claire that she is suffering from a potentially fatal disorder called Klippel-Trenaunay Syndrome.
Sosenko explains in the Marie Claire piece that she was born with the disorder.
“For me, it means my right leg is larger than my left and trails slightly when I walk,” Sosenko writes in Marie Claire. “My back is an uneven, fatty slab with a dense lump above the waist (which a guy in high school once called a meatball); and a gigantic port-wine stain reaches around my broad torso and down toward my right thigh.”
KTS is a congenital circulatory disorder that typically presents with abnormal benign growths on the skin, arteriovenous abscesses and varicose veins, according to the National Institute of Neurological Disorders and Stroke. There may also be fused toes or fingers, or extra digits, in patients with KTS, according to the Institute.
Although there is no cure for KTS, it is believed to occur early in the developmental stage of an embryo.
The progressive disorder is treated symptomatically. Skin lesions can be treated with laser surgery, and discrepancies in limb size may be treated with surgery or orthopedic devices.
Blood clots and skin infections are common in KTS, according to Boston Children’s Hospital’s Web site, and both pain and heaviness in the affected limbs are a big concern with the majority of patients.
The complications of KTS can be life-threatening, according to the National Institute of Neurological Disorders and Stroke.
In Sosenko’s case, the writer had kept her devastating health news private until recently. Sosenko, who is currently working on a memoir, doesn’t let the disease get in the way of living life.
“My story doesn't begin or end with K-T,” she writes in Marie Claire. “I have a full social calendar, a job that I love, excellent clothes, a teeny-tiny nose ring, a filthy mouth and a badass triangle pose.
"Most important, I have family and friends who care about me - and if one of them were in my position, I'd tell her that any man who judges her as harshly as she judges herself isn't worth knowing - and I'd mean it.”
Original Source : http://www.nydailynews.com/lifestyle/health/2009/05/19/2009-05-19_what_is_klippeltrenaunay_syndrome_brooklyn_writer_.html
