Voices Across America

My Diagnosis – so close, so far away

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State: New York
Congressional District: NY14


Chronic Pain, Genetic Disease

Issues and Challenges

Lauren has encountered: Copay Issues

My Story

I have struggled with chronic pain since high school. Eventually, as a young adult, I was diagnosed with Hypermobility Syndrome, but the issues never resolved even with treatment. As of now, I am nearing my 30s, and I'm attempting to receive an evaluation for Ehlers-Danlos Syndrome, but my insurance does not cover a referral to any nearby geneticists. Out-of-pocket costs are a hurdle, preventing me from receiving the care I need.

My Motivation and Inspiration

I am inspired by the stories of others who have managed to overcome the challenges of the healthcare industry to receive an EDS diagnosis. Hopefully, one day, I too can see a geneticist.

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