Five local women and a zebra were in Stevenage Old Town to launch a fundraising appeal for their charity ride with the big London to Brighton event.
On the Sunday 15th June Hazel, Jenny, Karen, Penny and Tracy will be cycling 55 miles from London to Brighton and would be grateful for any donations no matter how small to help raise money for Ehlers-Danlos Support UK – a charity providing support for individuals with Ehlers-Danlos Syndrome (EDS). https://www.justgiving.com/page/pez-eds
EDS is an invisible disability which affects the connective tissue we all have throughout our bodies. Basically connective tissues give support and hold our organs and joints in place. EDS causes a range of symptoms and varies in severity between individuals, many of whom experience extremely severe long term pain, chronic fatigue, dizziness, cardiovascular problems and digestive disorders. Sometimes EDS can be so severe sufferers require feeding tubes or wheelchairs.
Typically, due to a lack of awareness many sufferers wait years or decades to get diagnosed and it is estimated only 1 in 10 of sufferers are correctly diagnosed. There is no cure for EDS, but a correct diagnosis is essential to help individuals understand and manage their chronic condition, avoid harmful activities and to be able to get the support they need.
After a stressful and convoluted journey of hospital stays, scary appointments and endless and invasive tests to rule out a range of possible conditions, and largely due to her own research and persistence to be heard, Tracy’s daughter Abbie has been diagnosed with EDS.
Those who know Abbie will know how much she loves to be active and enjoy life – and run. She loves to run! She has good days where she can still do almost everything she loves, but also bad days where she is in chronic pain and too exhausted to even move due to EDS.
Hazel Smith, Jenny Garrett, Karen Ellis, Penny Schenkel and Tracy Pez are cycling to raise awareness and funds for the Ehlers-Danlos Support UK charity who help individuals and their families, provide advice and support groups and campaign to raise awareness about the condition. You can read more here: https://www.ehlers-danlos.org/what-is-eds/
