Dr. House, Where Are You?
Marianne Genetti

"Jane's fingers now shake to the point that she can't type. She is tired. At times her belly swells suddenly -- then just as suddenly, subsides. She thought there was hope when in March 2008, ABC News wrote an article about her undiagnosed case and published it on their web site. There were many comments posted in response to the article but none contained a glimmer of a hope regarding a diagnosis. Jane can no longer work, no longer has health insurance, no longer has savings and no longer has income."

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Insights Into Undiagnosed Illnesses
Marianne Genetti

"In the United States a rare disorder is deemed to be one which affects less than 200,000 people. The prevalence of pernicious anemia (B-12 deficiency) is estimated at more than 400,000. So if pernicious anemia is not that rare, why was it not diagnosed? And how could such a serious error have occurred?"

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Not All Zebras Live in Zoos: Nightmares of the Undiagnosed
Eileen Radziunas

"Living in a body consumed by a serious, undiagnosed and potentially life-threatening disease, left untreated, is a nightmare no one should have to live … yet, in reality, thousands do.  Like a prisoner erroneously incarcerated for a crime he did not commit, the undiagnosed rare disease patient knows, firsthand, the frustration, shame and trauma of being misjudged.  Unlike the unfairly accused, whose sentence is well-publicized, the patient’s is far more discreet – a private, internal hell … that is his and his alone."

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