The health of 15-year-old Justina Pelletier is fading fast as a Boston hospital where she’s been held since February refuses to let her go home, her family says.
The teenager is confined to a psychiatric ward at Boston’s Children’s Hospital and is now unable to even walk on her own, her family told the Daily Mail Online newspaper, which recently investigated the case.
The hospital won’t let her have her iPhone or her collection of beloved fluffy animal toys. But more devastating than that, she is permitted only one hour per week to see her family and the hospital eavesdrops on her phone calls home, her family alleges.
Why? The hospital says that the severe pain she suffers, from the poorly-understood hereditary condition Mitochondrial Disease, is actually all in her head.
Justina was diagnosed at the Boston-area Tufts Medical Center three years ago. She has required two surgeries to cope with the effects of the disease, which causes severe muscle pain and weakness.
Other symptoms, according to the advocacy group MitoAction, can include developmental disorders, autism-like traits, neurological problems and their related psychological issues such as confusion and memory loss — as well as other debilitating disorders.
Her older sister has also been diagnosed with Mitochondrial Disease, which is a genetic condition believed to affect one out of every 3,000 to 4,000 people in the United States.
When Justina got to Boston Children’s Hospital, doctors there said that her earlier diagnosis was hogwash. Really, Justina was just mentally ill.
She had a form of Somataform Disorder, they said, a psychological condition that causes patients to imagine physical pain and other symptoms so vividly that the pain is experienced as real — even though doctors cannot find any cause for it.
Patients with Somataform Disorder are not faking their symptoms, medical professionals emphasize. Patients are not aware of the cause and therefore the pain they experience is real.
Justina’s parents feel that the hospital is accusing them of abusing their daughter.
“They told me that Mitochondrial Disease did not exist,” said her father, Lou Pelletier who is a financial planner. “They said she had been misdiagnosed, overmedicated and forced to undergo unnecessary procedures. It was as though they were accusing us of needlessly harming our daughter.”
The hospital, which has not commented publicly on the case citing a court-imposed gag order, has prevented the Pelletiers from seeking a second opinion on their daughter’s condition, the family says.
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In 2008, Major League Baseball player Rocco Baldelli was diagnosed with Mitochondrial Disease, but it was later learned that his condition was actually a different kind of muscular disorder called channelopathy, which is somewhat less serious. He retired in 2010 due to the condition.