Story
Vascular Ehlers-Danlos Syndrome (VEDS) is a rare inherited genetic condition that creates a defect in a key component of the body, called collagen. Collagen is like the glue needed for keeping the cells of the body together.
Patients with this defect suffer from very fragile skin, arteries and internal organs. This results in frequent bruising, excessive joint mobility and often sudden rapid growth of blood vessels which if not recognised quickly, can burst and in the worst cases, often be fatal. Individuals with this condition unfortunately have an average life expectancy of approximately 48 years, with many individuals experiencing years of anxiety, stress and sub-optimal care due to significant lack of awareness of this condition, by both the general public and health care professionals.
We are a (what do you call a group of health care workers, a school? a troop?) of vascular scientists based at Addenbrooke's hospital who perform ultrasound scans for vascular disorders. We are a group of very mixed abilities, with two keen runners, two reluctant but enthusiastic "joggers" and one "coming out of retirement" jogger who intend to raise awareness of this rare condition by dragging our legs for 13.1 miles as fast as we can for a good cause.
We also are running to help raise money to the dedicated VEDS charity called annabelleschallenge, which was created by Annabelle's parents in 2013. The charity's goals are to increase education of this rare condition, support other individuals who have been diagnosed and and help fund research into effective treatments.
Like all genetic conditions, this can occur to anyone therefore we implore you to please contribute to our cause and assist in improving the lives of this underrepresented and underfunded patient group.
Every donation helps motivate us through the dark wintery nights so we appreciate anything you can give!