Carla Sosenko, well-known copy editor and freelance writer, has revealed that she is suffering from Klippel-Trenaunay Syndrome (K-T or KTS).

A rare congenital medical condition in which blood vessels and/or lymph vessels fail to form properly, K-T is painful and life-threatening.

Klippel-Trenaunay Syndrome is characterized by a triad of port-wine stain, varicose veins, and bony and soft tissue hypertrophy involving an extremity.

There is no cure for KTS. Treatment is symptomatic. Laser surgery can diminish or erase some skin lesions. Surgery may correct discrepancies in limb size, but orthopedic devices may be more appropriate.

While the disease presents differently for everyone who has it, Carla says for her it means “my right leg is larger than my left and trails slightly when I walk; 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.”

In an article for Marie-Claire, Carla writes that she knows she is one of the lucky ones.  The disease could have caused blindness or necessitated amputation.

Carla Sosenko lives in Brooklyn, NY, and is currently working on a memoir.

More Carla Sosenko and Klippel-Trenaunay Syndrome pictures below.

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Filed under: Across the Nation