12 activists share what they want you to know about living with a rare disease
February 29, 2016 - Uncategorized
When you’re sick, you seek medical advice. Visiting a doctor, you expect answers — usually in the form of a solid diagnosis and medication to get you on the mend.
But imagine your doctor had few answers, saying your illness was rare, and they had never actually met someone with your symptoms. It was so rare, in fact, even they were left doing Internet searches to try to figure it all out.
This medical uncertainty is often a reality for those living with rare diseases and disorders. In the U.S., rare diseases and disorders are defined as illnesses and conditions impacting 200,000 people or fewer across the country. Globally, the threshold for people impacted differs depending on a country’s population. A country like the UK, for instance, marks a disease or disorder “rare” if it impacts 50,000 people or fewer nationwide. Read more…