The Big Reveal: Carla Sosenko suffers Klippel Trenaunay Syndrome

Well known copy editor and freelance writer Carla Sosenko tells Marie Claire Magazine that she was born with a rare Klippel Trenaunay Syndrome.

In fact the story, published in Marie Claire, is written by Carla Sosenko herself where she tells what it means to live and date with Klippel Trenaunay Syndrome.

"I was born with the rare circulatory disorder Klippel-Trenaunay syndrome (K-T), which translates differently for everyone who has it. For me, 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. I know it could have been worse. I might have been blind; I might have needed amputation. I know that I'm lucky.

"But K-T definitely complicates things. Tonight Joel hasn't a clue. The dating site where he found me promised that my body type was Average, and as far as he can tell, it is. What else could I have chosen? There was no space for categorizing just my left leg as Slim and my back as Not At All Back-like. No casual way to mention K-T along with my taste for Middle Eastern food and mistrust of cats. I can conceal my body for a time, to a point, with clever dressing and maneuvering, so what Joel sees stacks up to the pictures I've posted: yoga arms, bony clavicle, long, graceful neck in full view. And my pretty face—my beautiful face, if I choose to indulge the flattery I've heard on occasion."

National Institute of Neurological Disorders And Stroke details more information about Klippel-Trenaunay syndrome.

Klippel-Trenaunay syndrome (KTS) is a congenital circulatory disorder characterized by hemangiomas (abnormal benign growths on the skin consisting of masses of blood vessels), arteriovenous abscesses, and varicose veins, usually on the limbs. The affected limbs may be enlarged and warmer than normal. Fused toes or fingers, or extra toes or fingers, may be present. Bleeding may occur, often as a result of a rectal or vaginal tumor. The cause of the disorder is unknown. A similar port-wine stain disorder in which individuals have vascular anomalies and limb enlargement is Sturge-Weber syndrome. These patients may experience seizures and mental deficiency.
Is there any treatment?

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.

What is the prognosis?

KTS is a progressive disorder, and complications may be life-threatening.

What research is being done?

The NINDS supports research on congenital disorders such as KTS with the goal of finding new means to treat and prevent them.