EmpowHER's community forums are busy places. We get many questions from members who simply ask, "What's wrong with me?" Numerous visits to the doctor, a plethora of tests and sometimes invasive procedures, all end with the patient being told that they cannot be given a firm diagnosis.
Patients feel frustrated and scared. What if it's something rare and incurable? What if it doesn't even have a name yet? What if their doctor thinks they are making it all up? Are they making it up?
These mystery illnesses are more common that we think. We know a lot about autoimmune conditions but yet so little. New illnesses crop up all the time, found through better diagnostic technology, based on environmental factors and based on our ever-changing lifestyles -- some that are slowly killing us.
Health Day News reports on a clinic run by the government that specializes in helping people find a diagnosis when no other clinic could. The National Institute of Health's Undiagnosed Diseases Program carefully selects people who have gone through every option and have still come up undiagnosed, and at the end of their rope.
Because there are about 6,500 rare diseases as possibilities, this process is painstaking. Of the over 300 patients chosen in the past three years (most, if not all, have gone through major medical facilities in the United States looking for answers) 39 have had their medical mysteries solved. Preferred patients are those with family who can help, since genetic testing is a major factor in this particular program.
The patients that have received a firm diagnosis all have rare, or extremely rare conditions. However, their diagnoses vary from cancers and autoimmune conditions to mental illnesses and heart disease. And while a 20 percent diagnostic rate may seem disappointing, having spent years or even decades without knowing what's wrong, this program has been a literal life saver.
More can be read about this program here: http://rarediseases.info.nih.gov/UndiagnosedDiseases/FAQ.aspx/
Do you have an undiagnosed, chronic illness? Share your story with us!
Health.com. For Those With Mystery Illnesses, a 'Clinic of Last Resort'. Web. October 27, 2011.
Reviewed October 28, 2011
by Michele Blacksberg RN
Edited by Jody Smith