In Need of a Diagnosis

ORLANDO, Fla. (Ivanhoe Newswire) -- Five million people living with diabetes are undiagnosed. The same is true for 18 million with osteoporosis and three million with Parkinson's disease. Not having a diagnosis can be dangerous, but also frustrating for patients. Now, there are new ways to get help.

Charmaine Frederick needed an answer. She started falling down and had pain in her arm and shoulder.

"When I went to my physicians, they really didn't know what to do with me," Frederick recalled to Ivanhoe.

Andrea Chervenak wanted to know what was causing her pain, weakness, dizziness and heart palpitations.

"I just said, 'god, if this is how I'm going to exist, I'd rather be dead,'" she said.

Two women with troubling symptoms and no diagnosis.

"If you don't have a diagnosis, it's like being born without a birth certificate," Marianne Genetti described.

Genetti runs a non-profit organization called In Need of Diagnosis. They help undiagnosed patients find doctors and resources while providing support. She's received letters from all over the world.

Less than 3 percent of public health care dollars are spent on diagnostics. About 40 percent of all illnesses are misdiagnosed. Some of the most common … cancer, clogged arteries, heart attacks, infection and aortic tears

"As a society, we are not good at diagnosing," Genetti said. "This is not something we've paid much attention to."

What can you do? Ask for more tests, do your own research, and don't think no news is good news. Up to 33 percent of doctors don't always notify patients about abnormal test results.

It took two doctors, several tests and many months before Frederick got her diagnosis: Parkinson's disease.

"The hardest thing has been a reduction in my independence," Frederick said.

Chervenak still doesn't have an accurate diagnosis. She's moving forward and has written a book and created a website to help others focus on the positive.

"I don't allow it to take control and take over my life," Chervenak said. "There is always hope. There is always light. There is always a way."

Genetti plans to work with other nonprofit groups to create a national symptoms database so people with undiagnosed disorders can search by symptom to find out what's wrong. There's currently nothing like it. Last year, the National Institutes of Health launched an undiagnosed diseases program, but they only accept 100 patients per year.

If you would like more information, please contact:

Marianne Genetti, Meg@inod.org, http://www.inod.org

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