Moyamoya means “puff of smoke” in Japanese. It’s a rare and bad brain disease that causes transient ischemic attacks (TIA), mental decline, aphasia. My 15-year-old patient had it. Her chart contained the following: plethora of MRI brain findings – aneurysmal outpouchings, sequelae of vasculopathy, parietal-occipital gliosis.
The patient couldn’t speak but smiled brightly and embarrassingly. Imagine a teenager not being able to talk. The young woman had lost her appetite and looked like a bag of bones in her pretty, pale, blue sari.
She was brought to the clinic by her sister and father and the two switched between Hindi and English effortlessly. The family’s love and devotion to her was absolute – I could see it in their eyes and hear it in the tone of their voices. But they also exuded the fear, panic and desperation that always accompanies the diagnosis of a potentially, fatal illness.
Two months earlier she was living a normal life. The decline was slow and perplexing. At first they thought she was depressed and sent her to a psychiatrist. She was put on several medications but didn’t improve. Next a battery of neuro-psych testing. Inconclusive. Language atrophy, mental confusion. Finally MRI. Bingo. Tentative diagnosis of Moyamoya. Then definitive.
The teen was uninsured, could I help them get insurance? Then there was the moment I always dread: I have to ask if the patient is documented or undocumented. The answer to that question can mean the difference between life and a hellish and messy death in the greatest Democracy in the world – The United States of A lot of uninsured.
She was born in Chicago – thus documented!
When I said she would definetly get Medicaid, smiles all around. And then tears. Including mine.