Dr. House, Where Are You?
"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."
Click here to read Dr. House, Where Are You???
Insights Into Undiagnosed
"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?"
Click here to read Insights Into Undiagnosed Illness
Not All Zebras Live in Zoos: Nightmares of the Undiagnosed
"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."
Click here to read Not All Zebras Live in Zoos
In Need Of Diagnosis, Inc. (INOD)
A 501(c)3 nonprofit organization
INOD articles and mention of INOD in the media
Dr. House! Where are you??? - INOD article about the need for a medical specialty in “diagnosis”. http://inod.org/dr_house.aspx
Insights Into Undiagnosed Illness - INOD article that is sent to those who contact INOD for help. http://inod.org/insights.aspx
INOD’s website - http://www.inod.org/
INOD on YouTube - http://www.youtube.com/user/inod2009?ob=0&feature=results_main
INOD on radio: Beth Perrell of Retrospect on WDBO - http://tinyurl.com/inod-radiofinal
Undiagnosed Diseases Program (NIH) - http://rarediseases.info.nih.gov/Resources.aspx?PageID=31
INOD listing with the Community Foundation of Central Florida and with Guidestar -
Health column of the Los Angeles Times - http://tinyurl.com/inod-latimes
Hazleton Native Honored for work with undiagnosed – Hazleton, Pa., Nov. 5, 2011 http://standardspeaker.com/news/hazleton-native-honored-for-work-with-undiagnosed-1.1227945
Not All Zebras Live in Zoos:Nightmares of the Undiagnosed – Article by Eileen Radziunas, INOD Board Member. October 2011 http://tinyurl.com/zebras-zoos
Woman’s Foundation Helps Those In Need Of Diagnosis – Times Leader, Wilkes-Barre, Pa., June 1, 2008 http://www.checkorphan.org/grid/news/people/woman-s-foundation-helps-those-in-need-of-diagnosis
Spontaneous Inflating Abdomen: Untreated, Undiagnosed and Unhappy – ABC health news online. http://abcnews.go.com/Health/MindMoodNews/Story?id=4403716&page=1
Health agency puts spotlight on mystery diseases - May 22, 2008, Nature magazine.
News From INOD (INOD’s newsletters) - http://inod.org/Newsletter.aspx