INOD Provides Hope for Undiagnosed
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Many potentially fatal illnesses go undetected until they are irreversible. The technology for screening is available but is not often used. One problem is that health insurance does not, as a rule, cover tests for screening. Getting a correct diagnosis depends largely on the experience of the physician.
Those who contact In Need Of Diagnosis, Inc. (INOD) for help have often been to multiple university hospitals, to major clinics and to “experts” but they still have no diagnosis. They don’t know what to do or where else to go. INOD does not diagnose but it can sometimes identify an unexplored option that might lead to help. INOD also tries to help people find a physician who can think outside the box.
One woman who has spent four years seeking a diagnosis wrote to INOD saying, “Thank you for your continued support. I absolutely agree with you. I will not accept psychological as a diagnosis. I will continue to seek the physician that can help me. So good to know that I indeed have an alternative this time. So many times I have gone on consultations only to be disappointed and not have any idea where to turn. NO MORE? I have INOD? Praise the Lord. I do have options.”
In May 2008, the National Institutes of Health (NIH) began the Undiagnosed Diseases Program (UDP). Initially, the program was set up to accept 50 patients a year. Within the first three months, there were 1400 inquiries. Those accepted spend one week at the NIH hospital. While there, they have extensive testing and see specialists from various NIH institutes. Despite this intensive investigation, UDP is successful in diagnosing just over 10%. This low rate of success is not due to a lack of expertise but rather to how little is known about the human body.
There have been several recent television programs that mentioned “30,000,000” as the number of people who are undiagnosed. But there are no “official” statistics.
One reason is that without a medical specialty in diagnosis, there is no one to keep track. Now when a physician is unable to make a diagnosis, he/she assumes that the next physician will. There is no way for them to know that the problem is never diagnosed.
There was an article about the difficulty that can be encountered in getting a correct diagnosis in the July 2011 issue of the AARP Magazine in which INOD was mentioned. Over 600 people have since contacted INOD solely because of that article.
INOD functions with a volunteer executive director (who is INOD’s founder) and one paid staff person. The services provided by INOD are without cost to the client. In January 2013, INOD will be hosting the first International Diagnosis Symposium. This will bring together medical professionals, technology providers, educators, rare disease nonprofits, testing laboratories and people who are undiagnosed to discuss what might be done to raise the bar on diagnosis.
Everyone in the world has a stake in being able to get an accurate diagnosis in a timely manner. If the diagnosis is not correct, the treatment won’t be correct. As soon as the public realizes this and demands change, change will come about.
More About This Charity
Region
South
Category
Health and Well Being
Name
In Need of Diagnosis
Mission
In Need of Diagnosis, Inc. (INOD) advocates for more accurate and timely diagnoses and is a resource center for those who suffer with illnesses that have eluded diagnosis.
Impact
- This Charity raised $32,000 in the past year.
- This Charity helped 2,800 individuals identify their previously undiagnosed diseases.
Works In
International
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