A tenacious student uncovered the root of an onslaught of broken bones
“My family just thought I was a clumsy child,” said Blocker, 30, who grew up near Jackson, Miss., where he still lives. “I was very active.”
Over the years, Blocker said, doctors set his broken bones and treated other orthopedic problems, including scoliosis, a sideways curvature of the spine. But none suggested taking a closer look, even after Blocker underwent multiple surgeries to replace both hips in his 20s — an operation typically performed on people decades older.
The premature and unexpected failure of those hip replacements convinced Blocker his skeletal problems had a cause that was being overlooked. At 24, while a graduate student in biomedical research, Blocker harnessed his skills and trained them on himself. He spent several weeks digging into his medical records and scrolling through scientific websites before hitting pay dirt: a possible diagnosis that was subsequently confirmed by genetic testing.
“It was a relief to have an answer,” said Blocker, who works for an insurance broker. “But I’ve always wondered, how did this go missed for so long?”
The answer, one of his doctors later theorized, may reflect evolving scientific knowledge about his rare diagnosis, as well as Blocker’s own complicated medical history.
Blocker’s bones weren’t his only problem.
“I had a lot of issues with my teeth growing up,” he said. His molars, typically the largest and strongest teeth, would crack inexplicably. By the time he graduated from high school, seven teeth had been extracted. Blocker also had numerous cavities, which his dentist attributed to “weak teeth.” In high school he had two wisdom teeth removed and healing was unusually slow; the oral surgeon noted a weakness in his jawbone but did not recommend further investigation.
In his midteens, Blocker developed recurring problems with his right shoulder. The first time, he dislocated it while throwing a ball. Another dislocation occurred while he was sleeping, although no one could explain how or why this had happened.
During his senior year of high school, Blocker was forced to contend with a more urgent problem. After a two-week hospitalization that capped months of abdominal pain during which his weight plummeted to 100 pounds, Blocker, who is 5-foot-10, was diagnosed with Crohn’s disease. The chronic inflammatory bowel disease causes severe diarrhea and weight loss.
He was prescribed prednisone, a mainstay drug used to treat Crohn’s. Blocker said he took a relatively low dose of the corticosteroid, which reduces inflammation, for about eight weeks.
A year later in January 2011 when the disease flared, Blocker was hospitalized again and underwent an abdominal CT scan. The scan revealed an alarming and unexpected incidental finding: avascular necrosis of both hips. A bone density scan also found that Blocker had severe osteoporosis.
Avascular necrosis occurs when the blood supply to a bone is cut off, causing the tissue to collapse and die and threatening the integrity of the structure. Causes include long-term steroid use particularly at high doses, excessive alcohol consumption, fractures and a variety of medical conditions. People with inflammatory bowel disease may have a reduced ability to absorb calcium and vitamin D, which can affect bone density and lead to osteoporosis, a condition in which bones become weak and brittle.
“The orthopedist told me my hip bones were dying and said it could be related to the prednisone use,” Blocker recalled. But that seemed questionable: He had taken the drug for about eight weeks and not at a high dose.
A year later, after other treatments had failed and Blocker’s hip joints began to collapse, both hips were replaced in operations three months apart.
“I spent 2012 mostly inside,” said Blocker, then a 20-year-old undergraduate who took a year-long medical leave from Mississippi College and moved back home. “It was very difficult.”
Between 2012 and 2016, Blocker said, he again broke his nose and wrist, along with several toes. One night in February 2016 Blocker was sitting on his bed when he turned to grab something off a bedside table. He instantly felt a shooting pain in his hip so intense he was unable to move. His wife, Emily, summoned a friend…
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