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The Undiagnosed Diseases Program

By HERWriter
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Every year, thousands of people struggle with mysterious ailments and cope with undiagnosed diseases. Recently, the National Institutes of Health (NIH) launched a groundbreaking program aimed to provide answers to patients with mysterious illnesses that have eluded diagnosis.

The program, called the Undiagnosed Diseases Program, focuses on the some of the most puzzling medical cases referred to the NIH Clinical Center by physicians across the nation. The program sees only three to four patients a week. Also, the NIH program brings together experts from various fields in medicine to examine patients at no cost.

According to the NIH, a small number of patients suffer from symptoms that do not correspond to known conditions, making their care and treatment extraordinarily difficult. The history of biomedical research and the careful study of baffling cases can provide new insights into the mechanisms of disease both rare and common.

Patients in the program are evaluated using the unique combination of scientific and medical expertise and resources at the NIH Clinical Center in Bethesda, Maryland. Two nurse practitioners manage patient recruitment and logistics which utilize existing facilities and staff at the NIH Clinical Center.

If you are interested in participating in the program, discuss the option with your primary physician or health-care provider (nurse practitioner or physician’s assistant). Information specialists at the Clinical Centers Patient Recruitment Call Center (1-866-444-8806) can provide information about eligibility and what kinds of medical information referring physicians must submit for review by the programs medical team.

Information your physician must provide includes:
• A summary letter describing your condition, when it was first noted and your current health status
• A list of treatments and medications that have already been tried and their effects
• Copies of reports and results of pertinent diagnostic tests, along with X-rays, MRI results, and other imaging records/studies. Copies of the actual imaging studies are preferred.

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EmpowHER Guest

Hi, my name is Jodi and I’m with a daytime talk show. I’m seeking people who have a medical issue but no one can figure out what it is. Have you seen every doctor under the sun, but none of them can tell what's wrong with you? Maybe you've described your symptoms to friends and family repeatedly, but no one believes you. Do you think you've been misdiagnosed by a doctor since your illness hasn't gone away? If you want your own medical mystery solved once and for all, we want to hear about it! Email me ASAP at DaytimeTVShow@gmail.com with your name, number, self description and photo.

September 1, 2010 - 9:51am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.