Stigmata? Nameless Condition, Mysterious Bleeding

Every decade, people around the globe come forward to claim that they spontaneously bleed and bruise without an injury, disease or chemical to cause it.

Stigmata might first come to mind, but there are many terms for the spontaneous bleeding -- psychogenic purpura, autoerythrocyte sensitization, Gardner-Diamond syndrome -- and just as many different reactions to the claims.

Skeptics, the religious, psychoanalysts and the medical profession have all vied to explain the condition. And those who claim to have the symptoms often report they are mystified and stigmatized and unable to get help.

Take the family of Twinkle Dwivedi, a 13-year-old girl from Lucknow, India, who has spent the better part of a year asking doctors for a physical explanation to her unusual bleeding.

Searching for a Blood Disorder

Dwivedi and her family say she bleeds spontaneously from her mouth, her ears, her eyes, her hairline and the soles of her feet. The bleeding lasts for only a couple of minutes, but it can start five to 10 times a day.

The first time it happened, in July 2007, Dwivedi said she was quietly taking notes in class when blood suddenly started to ooze from her mouth. It happened again a few days later, and eventually the bleeding became a regular problem.

Since then, Dwivedi's family said this painful cycle has threatened her life and completely changed her world: She has lost friends, her chance to be at school, and her family must keep someone at the house with her at all times.

From the beginning, Dwivedi's family went to clinics, then hospitals, then specialty centers just trying to get a diagnosis and some hope of relief.

"I still remember that day very well when Twinkle came to my clinic," said Dr. Pervez Ahmed Siddiqui, Dwivedi's family physician.

"Blood was profusely oozing from her swollen nose and lips. Since she was coming from the school, I thought she might have got injured," he said.

But Dwivedi hadn't been in a school fight, and in the days that followed she returned to his office with more bleeding. She lost so much blood that she spent three days in the intensive care unit.

Siddiqui first referred her to an ear, nose and throat specialist, and then to a local renowned government hospital, the Sanjay Gandhi Postgraduate Institute of Medical Sciences. Finally, Siddiqui sent her to the All India Institute of Medical Science, or AIIMS, in Delhi, one of the best medical institutes in India.

Diagnosing Rare Bleeding

"Doctors over there told her that she has some rare blood disorder but couldn't find a name for that," Siddiqui said.

While doctors at AIIMS could confirm seeing Dwivedi they were bound by hospital privacy rules not to disclose more information without a series of written consent forms.

Dr. Renu Saxena, a professor and head of the hospital's hematology department, told that her team gave Siddiqui a diagnosis. But Siddiqui and the Dwivedi family say they still don't have a diagnosis, or a treatment.

"After almost 1½ years, it's back to square one -- she bleeds every day through her pores," Siddiqui said. All he can do, he said, is give Dwivedi a blood transfusion every two months.

"I feel so helpless and start cursing myself when that poor soul stares at me blankly and asks me whether she would ever get cured," Siddiqui said.

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