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6 Hidden Obstacles People With Rare Disease Face

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themighty.com

As someone who has a rare disease that almost no one I talk to has heard of, I can attest that there are a lot of factors to having a rare disease that most people don’t think about.

I have Stickler syndrome, which is a hereditary condition that affects connective tissues and often comes with severe near-sightedness, potential hearing loss, unique facial features and a lot of joint problems, beginning at a young age.

Roughly 1 in 10,000 people in the U.S. have Stickler syndrome and fewer than 20,000 new cases are diagnosed per year. But I’m not here to complain about my condition or inform people what it really is, although some of the following points I’ll make may do so.

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