A decade of rare disease days

Joe Hodgeson informs us of the immense importance of recognising rare diseases

13th March 2017

The last day of February every year is reserved for a few people’s birthdays, and Rare Disease Day, an event which aims to raise awareness of rare diseases, and improve aid for the people affected by them. The European Organization for Rare Diseases, or EURORDIS for short (yet still unwieldy), approximates that as many as 5000 to 7000 individual rare diseases exist, and that 6-8% of the European Union are affected by one. People outside the EU are also affected by them unfortunately (don’t get excited leave voters), and The Global Genes Projects estimates around 300 million people are afflicted by a rare disease.

How then, if so many people are burdened with these illnesses, do we not know about afflictions like Hughes-Stovin Syndrome, or Pityriasis rubra pilaris, or any of the other thousands of other obscure, overlooked diseases? Why hasn’t Channel 4 made an hour long special about someone affected by Boxer’s Dementia? Why doesn’t the BBC make an insightful series of webisodes looking into the daily life and troubles of someone with Cystic Fibrosis? Why doesn’t Five do an episode of Extraordinary People following the life of a man suffering with epidermodysplasia verruciformis? Oh no, hold on, they did. Because epidermodysplasia verruciformis is an extremely rare genetic skin disorder, resulting in uncontrolled HPV infections and the growth of scaly macules and papules, what makes you look like a tree. Wow, mental. Hope there are some good shots of him looking like a tree.

The point I’m trying to make is, when people think of the term ‘rare diseases’, a lot of them immediately wonder what unspeakable deformities someone might be affected by, and whether there are any juicy pics. Like the people who would go to the circus to see Joseph Merrick, the original ‘Elephant Man’, everyone loves a freak show. This is why ‘Rare Disease Day’ is so important, it compels people not to stare, but to get active. It calls on universities, students, companies, politicians and medical professionals to do more research, to work harder towards better treatment, and to be more aware of the millions of people affected by more uncommon ailments. In a world where massive genetic breakthroughs were only made towards curing ALS, a rare motor neuron disease, because people had a bit of fun throwing ice over themselves, public widespread social activism is more effective and important than ever.

“This is why ‘Rare Disease Day’ is so important, it compels people not to stare, but to get active”

2017 marks the tenth Rare Disease Day since its maiden voyage in 2008, and it’s come a long way since then, figuratively and literally. In 2009, the event went international, when the National Organization for Rare Diseases (NORD) in the US managed to mobilize around 200 rare disease patient advocacy organizations, and organizations in China, Australia, Taiwan, and Latin America also worked towards promoting the day in their countries. In 2010, 46 countries took part in the event, and the number has only grown since then, with activism now taking place in over 90 countries. During the event, people participated in walks and press conferences (not at the same time) to help raise awareness, fundraising events were organized, efforts were made en masse to contact government representatives, and The Global Genes Project even encourage people to wear a ribbon made out of denim, to specifically raise awareness of rare diseases caused by genetic disorders.

Because genes sounds like jeans.Normally I’d condemn such a pun, but my icy heart has been melted by the warm flame of charity, like in Dr Suess’ The Grinch. You know when his heart gets big? Yeah, like that. Although that is known as Cardiomegaly, or an ‘enlarged heart’ and can result in sudden cardiac death, but don’t worry, the Grinch and I are both fine, thanks to the combined efforts of everyone involved in Rare Disease Day.

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