Carla Sosenko -- Brooklyn writer on life with rare disease

Carla Sosenko opened up about having a rare disorder known as Klippel Trenaunay Syndrome. Carla Sosenko, a Brooklyn-based writer, opens up about having Klippel Trenaunay Syndrome in the new issue of Marie Claire.

The disorder has taken a turn for the worse, so Sosenko has decided to publicly discuss the rare disorder.

From an article at the Alternative Health Journal:
Klippel-Trenaunay syndrome (KTS) manifests itself in many different ways; for Carla, it is visible in the fact that her right leg is larger than her left and trails slightly when she walks.

In a recent article for Marie Claire Carla describes it:  “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. I know it could have been worse. I might have been blind; I might have needed amputation. I know that I'm lucky.”

Until recently Carla Senoko has kept her struggle growing up with KTS hidden, and just as well, it is a private and embarrassing matter for many people who are afflicted with it. Carla writes with an attitude towards men that implies she keeps them at a distance in order to hide her ‘defects’, however she can’t always keep the cool that she is known for. “Sometimes…my desire to be understood is overwhelming. “ She writes.

Carla writes candidly about her condition and eventually finds some sort of peace with her decision to go public.

She describes herself as more than a person with KT Syndrom: “My story doesn't begin or end with K-T. 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.

By publically coming out of darkness and baring herself to the public, Carla finds acceptance, and will hopefully give courage to those who are still hiding an affliction with KTS in their everyday lives.

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A senior associate editor at Zimbio, writing about entertainment and current events.