Wednesday, February 26, 2014

More on Justina Pelletier case

Mom of Sick Connecticut Teen 'Collapses' in Court After Judge Sends
Kid to Foster Care
Feb. 25, 2014

Lou and Linda Pelletier, of West Hartford, Conn., have been fighting
for their daughter who they say has mitochondrial disease, a rare
genetic disorder with physical symptoms that can affect every part of
the body. ...

... "If she had somatoform disorder, then her condition would have
improved," he said. "She's not gotten any better."

... Justina was diagnosed with somatoform pain disorder, a psychiatric
condition when a person experiences physical pain for which no known
medical explanation can be found, according to her family. The case
highlights a growing concern among those with rare diseases and
autoimmune disorders that physical symptoms that cannot be explained
will be dismissed by doctors as psychosomatic.

... Mitochondrial disease affects the body's ability to make energy, according to Dr. Richard Boles, medical director of Courtagen Life
Sciences, a genetic testing company in Massachusetts, and a practicing
physician in Los Angeles.

"The symptoms can affect any part of the body," said Boles, who did
not treat Justina. "It can cause just about anything. People with
mitochondrial disease can have diabetes, autism or other types of
retardation, seizure disorders or migraine, chronic fatigue or
intestinal failure."

"People with mitochondrial disease have a lot of pain," he told earlier this month. "Normal sensations are amplified by the nervous system. They are not making it up. The idea of somatoform is you are making it up to serve some need. But they are having real pain."

... "The system has failed," said Justina's father Pelletier. "I am battling the medical world that thinks it knows everything."
* * *
As one of my teachers warned us, "a little knowledge is a dangerous thing."  Doctors think they know everything.  Generalists make wrong diagnoses instead of referring the patient to a specialist, and when the wrong treatment, for something they don't even have, causes the patient to get worse, the doctor verbally abuses the patient for "not wanting to get well" rather than acknowledging that the problem may be the wrong diagnosis/wrong treatment on the doctor's part, rather than willful disobedience on the patient's part.
I've been told that my symptoms are "medically impossible" -- just because it's not like 99% of other diseases doesn't mean it's impossible.  It means you're so focused on "thinking horses" that the concept of the existence of a zebra doesn't enter your mind.  Zebras, unlike unicorns, really do exist, and one of my doctors, when challenged whether there are any medical conditions where exercise is contra-indicated, quickly thought of one but then cautioned "you don't have that."  I know I don't have that condition, but it got him to think outside the box where exercise cures everything, to admit that what I was telling him about exercise making me worse is NOT impossible.  Rare, but not entirely impossible.

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