Ehlers-Danlos syndrome (EDS) is the name for a group of rare progressive genetic conditions that affect the connective tissue and collagen of the body. As connective tissues support the skin, tendons, ligaments, blood vessels, internal organs and bones people diagnosed with this syndrome can suffer varying symptoms from frequent dislocations to mitral valve and organ prolapse. Unfortunately there is no cure, only management of the condition.
Both Conor and Dominique have been personally affected by EDS - Dominique has struggled for many years with the condition affecting her spine, musculoskeletal system, autonomic system and general wellbeing. She has a daily struggle with frequent dislocations, chronic pain, chronic fatigue, and dizziness and fainting. As her best friend Conor has attended countless admissions to hospital holding his friend’s hand as he watched her struggle and deteriorate. So they decided to try to make things better for future generations of people living with EDS by raising money for research and educating the public about what it’s like to live with this largely unknown and rarely spoken about condition.
On Friday they begin their year long charity mission by shaving their heads before moving on to climbing London’s O2 followed by numerous sponsored walks and swims amongst a whole host of fundraising activities. This is a huge undertaking, especially for Dominique who is a part time wheelchair user but the pair want to push themselves both physically and mentally for the challenges ahead.
We wish them every success and look forward to following their journey.
Donate to this worthy cause here:
Find out more about EDS here: