People with rare diseases frequently experience stigma, isolation, and poor access to healthcare. Here's how we can all make a real difference, writes kathleen_bogart
. Their chronic pain may mean they need flexible working hours; employers may judge them as unreliable or incompetent.
Healthcare providers may stigmatize them, too. They are frequently misdiagnosed, told their condition is all in their head, or labeled as drug seekers. On average, people with rare diseases waitto get a diagnosis. That diagnosis is the gateway to information, treatment, community, and validation. Once I began studying rare diseases, I discovered that I know several people with EDS—you probably do, too! In fact, nearlyhas a rare disease or disorder. There are at least 7,000 different rare diseases or disorders, but we don’t have to study them individually to help the 25-30 million Americans living with a rare disease. A disorder is considered rare in the U.S.
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