Illustration by Owen Freeman
For years before the identity of her long-standing problem was revealed, Hannah Love’s family had its own name for the periodic, disabling episodes: “Hannah’s stomach thing.”
The attacks, which first struck when she was 3, would gradually progress from discomfort to a crescendo of sharp pains to an abdomen so swollen she could not bear the touch of clothing. Nausea and vomiting invariably followed.
(Jan Sturmann/For The Washington Post) - The drug that Hannah Love takes to control her stomach problem costs about $350,000, which is covered by insurance. Love developed the ailment when she was 3 years old.
“Usually I would lie down in front of the TV with a bowl until it passed,” recalled Love, now 38. Between episodes, which lasted 24 to 48 hours and occurred on average every few weeks, she was fine.
Doctors initially shrugged off the problem, figuring it would pass. They prescribed drugs that didn’t help and ran tests that found nothing. After conventional medicine provided no answer, her family turned to a host of alternative therapies that proved equally useless.
“It was humiliating to not have a name for something that was so clearly present in my life,” recalled Love, an associate editor at the University of California Press in Berkeley who grew up in nearby Oakland. “I was thinking, ‘How could they believe me?’ ’’ Doctors had told her parents that they thought the problem was psychological; one doctor suspected she was bulimic, which Love vehemently denied.
So when, at age 17, she learned the name and cause of the problem that had dominated her life, Love was surprised to feel oddly disappointed.
“I was sort of like — what? All those years and it was just a blood test?” she recalled telling her mother. The doctor who ordered the test remembers his distinctly different reaction. “I probably had ordered this test 10 times, but hers is the only one that came back positive,” said Ronald Adler, a retired gastroenterologist who remembers the details of Love’s case more than 20 years later. “I was relieved and happy that at least we had an answer. I remember being more worried about how to treat it.”
Trying alternative remedies
Until she was 6, Love said, her pediatricians didn’t do much except offer advice about possible symptomatic relief in the hope that the problem, whatever it was, would go away as she got older. Antibiotics didn’t help, and Love was growing normally so it didn’t seem likely that she had a malabsorption problem. A specialist suggested an endoscopy, a procedure that involves threading a tube down the throat and into the stomach to inspect the upper GI tract, which Love’s mother vetoed because she considered it overly invasive.
Frustrated by the lack of progress, Love’s mother turned to alternative medicine.
For the next several years, until she was about 11, Love received various unconventional treatments. She saw a homeopathic physician who treated her with herbs and other substances. She underwent biofeedback, psychic healing, nutritional treatments and Reichian therapy, which involves massage and breathing exercises.
All failed, although the homeopath noticed that Love exhibited “rebound” abdominal tenderness: pain when pressure is released, not applied. Most commonly a sign of appendicitis, which had been ruled out much earlier, it can also indicate swelling.
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