St Columba's College student raises awareness of Vascular EDS, a rare genetic condition

Students and staff from St Columba’s College celebrated REDS4VEDS Day on Friday 15^th May 2020 by wearing red to raise awareness of Vascular Ehlers-Danlos Syndrome (vEDS). Hugo, a student in Prep 3, has vEDS, and the day encourages people to wear red and then share a photo on social media.

Vascular Ehlers-Danlos Syndrome (vEDS) is a rare genetic condition that causes faulty collagen, meaning that Hugo’s skin tears and bruises easily if he falls over and his organs can rupture. It affects approximately 1 in 90,000 people.

Whilst Hugo should have been selling cakes and doing some competitions at school to raise money for the charity, this wasn’t possible due to Coronavirus. Instead, he decided to record a speech which was shown to his classmates and teachers over Microsoft Teams.

In his speech, Hugo talked about how the condition affects him: “vEDS affects my lifestyle a lot, so I can’t always do as many things as my friends do, like going on the top playground that has a gravel floor and I might slip over … I am lucky I am at a school with wonderful caring friends who look out for me all through the day and help me to stay safe.”

REDS4VEDS Day is hosted by Annabelle’s challenge, the only charity in UK for vEDS, which started 5 years ago. By sharing photos on social media with the hashtag #REDS4VEDS, the charity aims to raise awareness of the condition and its symptoms, so that people can be diagnosed and receive help faster.

So far, REDS4VEDS Day has raised over £9,000, which will help towards funding research and supporting families.

Well done Hugo for raising awareness about such an important cause, we are very proud of you!