People with rare diseases often feel invisible. The founders of Belle & Wilde know this from experience, which is why they are supporting Rare Disease Day on 28 February.
You may know that Belle & Wilde was set up after our founder Annabelle discovered she was gluten-intolerant, and started baking her own delicious gluten-free baked goods.
Unfortunately, gluten intolerance is only one of the health challenges that Annabelle has faced. In 2016, after suffering from a range of mystery illnesses, she was diagnosed with Ehlers-Danlos Syndrome (EDS) – a rare inherited condition that affects connective tissue. Her sister was later diagnosed with the same condition.
Life with a rare disease
The diagnosis of EDS in 2016 should have been a relief for Annabelle. But it was just the start of an ongoing quest for answers to everything that was going wrong in her body.
In an effort to improve her wellbeing, Annabelle and her mum began to make their own gluten-free bread using natural ingredients and no added preservatives, before launching their own award-winning bespoke bakery in Sussex in 2019. Something that started as a necessity has grown into a passion. So there is a happy ending of sorts.
Unfortunately the health issues that accompany EDS are multifold, complicated and painful, making life for sufferers a real challenge. As with so many rare diseases, there is not enough research into the condition and limited medical and public awareness.
Rare Disease Day
Thanks to organisations such as the Ehlers-Danlos Society (www.ehlers-danlos.com) and Rare Disease UK (www.raredisease.org.uk) this is now gradually changing. Belle & Wilde is delighted to support Rare Disease Day, which this year takes place on 28 February. This international event raises awareness of over 7,000 rare diseases and the challenges faced by people living with them.
The symbol of the Ehlers-Danlos Society is the zebra. Doctors are taught that when you hear hoofbeats, you should think horses (the most common explanation for a symptom) rather than zebras (an unusual diagnosis). But sometimes those hoofbeats are zebras, as it was in Annabelle’s case. By raising awareness of EDS and other rare diseases, we hope that the zebras among the horses will be recognised and get treatment and support more quickly.
So how can you help? The best way you can show your support for people with EDS and other rare diseases is to inform yourself – maybe start by checking out the websites mentioned above. Because even just hearing someone say “Ah yes, I’ve heard of that” can make a sufferer feel less invisible to the rest of society.