We, Sarah and Nick are running the Carsington half marathon in Derbyshire on the 14th of February. We have decided to run in aid of The Ehlers Danlos Society. Our daughter Bethany has Ehlers Danlos Syndrome (EDS), a connective tissue genetic condition which affects her whole body - from her skin and joints to her organs. Bethany has had EDS all her life, often being unwell as a child, though it started to get more severe from the age of 12. Symptoms of EDS include; joint hypermobility, unstable joints that easily dislocate, skin fragility, issues with organs and more. It can also cause other medical comorbidities. For Bethany, she also has Postural tachycardia syndrome (PoTS), Gastroparesis (paralysed stomach), slow colonic transit (paralysed bowel) and other conditions. Because of her Gastroparesis, caused by EDS, she has to be fed into her small intestines via a jejunostomy feeding tube. She is unable to eat or drink anything and all her nutrition, fluids and medications are delivered through this which takes up hours of her day. It is a real balancing act with her nutrition requiring regular blood tests to ensure her electrolytes are managed as she requires supplements and regular IV treatments. She also has an ileostomy stoma which means the end of her small bowel has been brought through an opening made in her abdomen. She has a stoma bag attached to the end which collects her stool. She also has to self catheterise as her bladder doesn’t empty properly and also became paralysed. Day to day she has so many time consuming medical care tasks to do just to stay alive. At any given moment she can be hospitalised, often resulting in being admitted for weeks at a time.

The Ehlers-Danlos Society is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). They support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD. At The Ehlers-Danlos Society, they are driving forward Care, Access, Research, and Education. This is such an important cause for us with it being so close to our heart. We would appreciate any support and donations for this important cause which will motivate us to cross that finish line.