He suffers from insomnia because he has to go to the bathroom every hour and a half. His blood pressure is far too high, he has digestive problems and is overtired. Bob Schwartz (59) had already been examined by more than a hundred doctors, but none of them were able to make a diagnosis. “A zebra between the zebras,” said a specialist to indicate the uniqueness of Schwartz’s disease.
He has insomnia because he has to go to the bathroom every hour and a half. His blood pressure is far too high; he has digestive problems and is overtired. More than a hundred doctors had already examined Bob Schwartz (59), but none of them were able to make a diagnosis. “A zebra among the zebras,” said a specialist to indicate the exceptional nature of Schwartz’s disease.
The insomnia is the most difficult for Bob Schwartz, a philanthropist from Detroit and a retired lawyer of patients who were victims of medical errors. When Schwartz does fall asleep, he wakes up after an hour and a half. Then he has to walk to the toilet to pee for a long time. Bob only gets four hours of sleep a night. He also suffers from fluid accumulation in the connective tissue, severe hormonal imbalance and loss of muscle mass.
Since 2016, Schwartz has visited more than a hundred doctors, but it remains a mystery to them exactly what disease the patient is suffering from. It is so rare for a specialist to call him “a zebra among zebra”. Last fall, he was admitted to the Undiagnosed Diseases Program of the National Institutes of Health (NIH) for another week, an institution that carries out a rigorous selection in the most challenging cases of illness that it wants to treat. Eighty percent of the applications are rejected. Schwartz’s is not, but he remained undiagnosed even after his stay there. The doctors note that his veins are enormously dilated and stretchable, but they have no idea of the cause or the correct treatment.
Until 2016, Bob Schwartz described himself as “the embodiment of health”. He ran marathons, was a vegetarian since his student days, never smoked, never drank alcohol. Bob ran 16 km every day and played basketball. But sometime in 2016 – he had already stopped as a lawyer at 47 in 2007 to establish a non-profit organization for the needy with his wife Robin – he suddenly began to feel tired. His hands and feet became more sensitive to the cold; the man noticed while jogging. “I’m just getting older,” he thought.
But in 2017, the ‘urinary problem’ arose. During the day there was merely any urine, but once he lay down in bed there was apparently no size on it. At night he urinated about 1.5 liters. His blood pressure rose from 11 over 6.5 to 18 over 10. The doctors were perplexed. A year later, at their request, he had himself re-examined to see the evolution. But the doctors did not get a step closer to solving the medical mystery.
According to one of NIH’s specialists, Donna Novacic, walking may have aggravated, but may also have delayed, the symptoms of Schwartz. The underlying cause could also be genetic, she knows. That is why Schwartz’ DNA is now also being examined. We are still waiting for the results.
“Some cases are not solved until years later,” she says. So there is still hope for Bob Schwartz, who for the time being can only wear unique compression clothing to support his veins. He continues to work on his condition as well as possible on his rowing machine and enjoys his friends, his wife, and his three grown-up children.