Are You Undiagnosed? Share Your Story


It took 19 years for doctors to finally diagnose me with a rare immune deficiency disease.

The total number of undiagnosed patients is unknown but considered to be vast. To provide some perspective on this epidemic, consider that it takes an average of 7.6 years in the United States to uncover a rare disease diagnosisWorldwide there are an estimated 350 million people living with a rare disease; add to those, patients still waiting for a diagnosis, patients who have been misdiagnosed, and adults and children who have diseases not yet named or recognized.

All my life doctors told me “it’s all in your head,” and “you’re overreacting.” It was belittling and humiliating. I was constantly catching colds and infections that never seemed to resolve. I was becoming more and more run down and as I struggled to fight for the only solution that seemed to help (constant antibiotics) I realized that I might never know what was really going on inside my body. It wasn’t until I found an infectious disease doctor, after hundreds of tests, hospital visits, and doctor appointments that I was finally tested for Hypogammaglobulinanemia.  Years later, I would be diagnosed with another chronic illness called Dysautonomia—or the dysfunction of the autonomic nervous system.

All patients, in whatever stage of their diagnostic odyssey deserve support. That’s why next month Global Genes will be celebrating Undiagnosed Diseases Awareness. And we want to showcase patient stories to see how we can help you find answers.

Please consider sharing your story with me and the Global Genes community. You can share the details of your story here.

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One thought on “Are You Undiagnosed? Share Your Story

  1. dana

    Just wanted to say I think this is a terrific site. I’m not rare but I did want to check this out. So many people need the information you can give. It’s very interesting to learn about ourselves and the possibilities to help our doctors help us. I have Lupus. I usually tell people I have a mystery disease. Thanks so much for info and helping so many people who are rare.

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