National Rare Diseases Awareness Day

To raise awareness and mark this year’s National Rare Diseases Awareness Day, we hosted a bake sale to raise money for the Ehler’s Danlos (EDS) Society.

The Ehler’s-Danlos Society not only provides support groups and information, but is always funding research backed by scientists all over the world. They have recently funded projects researching links between the digestive system and EDS and release the conferences on their YouTube channel.

We spoke to our Marketing Account Executive, Bethany, who was diagnosed with Ehler’s-Danlos two years ago.

“Raising awareness for rare diseases is something I feel strongly about as someone who has been recently diagnosed with the HEDS type (often referred to as Hypermobility Syndrome).

“I was diagnosed nearly two years ago with HEDS, Ehler’s Danlos type 3 hypermobility. Doctors still don’t particularly know a lot about the condition which is why it’s hard being diagnosed. I was lucky as my Mum was diagnosed first which meant that the family as a whole knew more about the condition.

“There are a lot of symptoms for EDS such as brain fog, fatigue and digestive issues, but the main symptom in hypermobility is joint pain, partial dislocations and dislocations. I have manageable symptoms and try warm showers, baths and general painkillers if I need to.

“A lot of people will ask when they hear about what EDS consists of is if I am in constant pain? My answer is that you feel uncomfortable sometimes, but you sort of get used to it and it becomes your normal. Before I was diagnosed, I was optimistic and thought (naively) that I was still going to get a growth spurt at 22! Haha!

“I manage my symptoms, mental and physical, by keeping a BuJo (Bullet Journal). This includes a food log, trip planning, mood trackers, daily trackers, calendars and more. Most importantly, I try to write down three things I am grateful for every single day.

“There is a lot of frustration that comes with the diagnosis, however I am much happier since working at USG, who have been extremely understanding and supportive of my condition, by helping to raise awareness and gain a better understanding of rare and invisible illnesses.”

We are very proud of Bethany for sharing her story and experiences of living with EDS and think we should all take note of her advice. Being grateful each day for example is something we should all take on board.