A rare disease is defined in the United States as a condition that affects fewer than 200,000 people. In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people.
It is estimated that HS affects 1-4% of the population. 1% of the population in the United States is more than 3 million people. Therefore, HS is not technically a rare disease.
But HS FEELS like a rare disease.
Rare Disease Day was February 28th and I shared this image to bring awareness to HS and how HS feels like a rare disease. The purpose of Rare Disease Day is to bring awareness to diseases that people would otherwise not know about. Diseases that do not have a lot of treatment or research. Diseases that have a serious impact on patients’ lives, beyond just the symptoms of the disease. These are the same reasons why bringing awareness to HS is so important.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day exists there is no cure for these diseases and many go undiagnosed. The intention is to improve knowledge amongst the general public but also decision makers and researchers… Doesn’t this sound like HS?
This is because HS is a rare disease in every way except numbers. HS feels like a rare disease when:
- Research on HS is limited and rare. We do not understand much about HS and many medical professionals are not trained on it.
- The vast majority of the people you meet have never heard of HS
- You have to educate the people around you on a basic understanding of the disease and what it means for you
- You’ve watched doctors look up HS right next to you after you spelled it out for them.
- You have to visit on average 3 to 7 doctors before diagnosis
- It takes on average 10 years for you to receive a diagnosis.
- No one understands the cause or pathology
- There is no cure. There is barely any treatment.
- Having HS makes many people feel isolated
HS may not technically be a rare disease but it feels like one in every other way. It IS even classified as an orphan disease in the U.S. Orphan diseases were codified by Congress in 1983 to create financial incentives for drug companies to research and create treatments for diseases that would otherwise be ignored. In honor of Rare Disease Day, I’d like to raise awareness of HS in the hopes that it will be more known in the general public and prioritized by research.