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fischerfamily1verizonnet

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1 reviews

Review for In Need of Diagnosis, Orlando, FL, USA

Rating: 5 stars  

My mom and I have been to dozens of doctors including specialists over the years. We've had countless tests done and doctors tell us they are "stumped" and that we are "complicated cases". After we leave, they don't spend time researching the literature or calling colleagues to get an answer for us. They are only paid for their 15, 30 45 min. or hour long appointment. They have no incentive to go beyond that to find a diagnosis for their tricky patients. The patients who live without a diagnosis and their family members who watch them suffer and possibly die have a huge insentive to research the problem on their own and then take the information to the next doctor. INOD gives patients and their families a comprehensive site in which to search many rare disorders. We don't have to purchase expensive books, or leave our home to do research at a library. We can stay home and research and print from the comfort of our homes and some people can not leave to do this extra research because they are caring for a loved one who has an undiagnosed disorder. Without this site, more people will go longer without an answer. I have spent countless hours combing through the site and once or twice we thought we find the answer. Without this site, we wouldn't even have HOPE of finding an accurrate diagnosis. Some people get to a point, where the doctors feel that they have done everything they can - and so they stop and just try to manage the symptoms of a nameless diagnosis. We don't want to settle for that. We hope to find an accurrate diagnosis so that it can potentially be cured and we can resume the quality of life that we once had. This site is very valuable. I have it marked as one of my "favorites".

I've personally experienced the results of this organization in...

we thought we had an accurrate diagnosis. We printed out the material and took it to the specialist who suggested that it was worth a try. Accurracy of the diagnosis would come if she responded to the treatment medication, which did not happen.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

Role:  General Member of the Public & I have searched for a diagnoses for my mom's and my strange health problems.