What is EDS?

Ehlers-Danlos syndrome (EDS) is the name for a group of rare progressive genetic conditions that affect the connective tissue/collagen of the body. Connective tissues support the skin, tendons, ligaments, blood vessels, internal organs and bones. Thus, a person with EDS can have varying symptoms from frequent dislocations to mitral valve and organ prolapse. There is no cure. Only management.

What are we doing?

Working alongside Ehlers-Danlos Support UK (ehlers-danlos.org), best friends Conor Hawkins (aged 24) and Dominique Grace (aged 22) shall be organising a years worth of fundraising and awareness activities (including shaving their heads, climbing the O2 in London and partaking in sponsored walks and swims) to raise vital awareness, publicity and funding for EDS.

Why are we doing it?

Both Conor and Dominique have been personally affected by EDS - Dominique has struggled for many years with EDS, affecting her spine, musculoskeletal system, autonomic system and general wellbeing - likewise living with countless admissions to hospitals/doctor appointments. Conor, as her best friend, has had to watch and support Dominique struggle and deteriorate. Both want this to stop for future generations. Con & Dom believe educating people and increasing research/understanding will give people with EDS the best chance in life.