Why am I walking? 

This May for Ehlers-Danlos Awareness month I am participating in the inaugural Dazzle Walk to raise money for The Ehlers-Danlos Support UK. I was diagnosed with Hypermobile Ehlers-Danlos Syndrome in 2016 after 23 years of increasingly debilitating symptoms, having my pain and symptoms questioned, taking unnecessary medications and having inappropriate surgeries/treatment and falling into unmanageable chronic pain cycles. Despite a diagnosis and better management techniques, I still had to adapt and leave my job at the start of 2020. I am now studying nursing, because I want to understand the condition better myself and how care could be improved. 

Sadly, this is not an unusual story.  Studies show that the average time to diagnosis from the onset of disabling symptoms is 14 years. Patients report seeing tens of specialists and health care services (I have seen at least 15); poor knowledge, disbelief or a lack of empathy from healthcare professionals; and a lack of resources or information, including on genetic counselling and inheritability. EDS and HSD disproportionately affect women at a ratio of 3:1, and yet there is little research around the link with female sex hormones. 

The prevalance of both conditions in the general population is still poorly understood, and therefore classed as a rare disease. As a result, they could easily continue to be misunderstood and underrepresented in healthcare. This is what makes the work of EDS Support UK so important to me - through initiatives like their support groups, the EDS GP Toolkit and the helpline, they are offering hugely important support and care not available elsewhere. 

I'll be walking an average of 5k a day everyday in May. It may not sound like a lot, but with foot, knee and hip wobbly joints and pain and chronic fatigue, it will take some planning and pacing. I'm grateful for any donations, or everyone is welcome to join me for a walk and a discussion about hypermobility and invisible disabilities <3

About The Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD)

The Ehlers-Danlos syndromes (EDS) are a group of 13 individual genetic conditions, which affect the body’s connective tissue. HSD has similar symptoms to the most common type of EDS. People with EDS and HSD tend to experience a broad range of symptoms including long-term pain, very loose joints which dislocate easily, chronic fatigue, dizziness, palpitations and digestive disorders. These are complex syndromes affecting many systems of the body at once – despite this EDS and HSD are often invisible disabilities.

EDS UK Dazzle Walk 

In May 2021, apart of EDS and HSD awareness month, The Ehlers-Danlos Support UK will launch the inaugural Dazzle Walk. This exciting new fundraising initiative will see individuals donning their razzliest dazzliest zebra attire and walking to raise essential funds for the UK’s largest charity supporting people with EDS and HSD. Find out more: www.ehlers-danlos.org/dazzle

About the Ehlers-Danlos Support UK 

The Ehlers-Danlos Support UK (registered charity number 1157027) improves quality of life for people living with EDS and HSD. We are the largest UK charity exclusively working across the UK to represent, support, advise and inform those living with the conditions and the medical professionals working with them.