It's tough enough being diagnosed with a serious illness. But imagine the feeling when your doctors really can't figure out what's wrong.
In a small house, tucked away in an Orange County neighborhood, Rebecca Hollingsworth is checking her overflowing email -- up to 400 a month.
And then, there are the calls from people searching for answers they can’t find anywhere else.
“That are suffering every day from an undiagnosed or misdiagnosed condition,” Hollingsworth said.
The National Organization of Rare Diseases estimates there may be over two million of these cases. The late Mariann Genetti was one. She founded In Need Of Diagnosis, Inc. (INOD) in 2006 to help people who know “something” is wrong with their body.
“Many of them get labeled -- it's all in your head, it's a mental condition.”
Rebecca is carrying on Mariann's legacy at the non-profit and the never-ending search for information.
“The average person that's undiagnosed suffers for seven years before they get a valid diagnosis.”
Data people provide through the INOD website goes to an advisory committee of medical professionals who consider all possibilities and suggest other doctors.
“If you don't look outside of your general specialties, then you need to have a doctor that's going to look at you as a whole and say, ‘well it's all one big machine,’” Hollingsworth said.
INOD cannot give direct medical advice but after right years of operation, they have a ton of information in their database as well as a library to provide plenty of references.
It also advocates for insurance industry changes that would allow a patient to be covered for additional tests when a doctor admits he can't diagnose the condition.
“People will go from doctor to doctor to doctor trying to find a solution so this one might have a piece, this one might have a piece, but it's putting that puzzle together and that's one of the most important things.”
INOD is hoping to one day offer genetic testing to help zero in on a diagnosis. Insurance doesn't always cover that cost.