1st April 2017
7th May 2017
EDS is a debilitating and often life threatening conditions, there is very little research and we are a long way off a cure, we need research.
Ehlers Danos Syndrome (EDS) includes a complex group of rare disorders caused by changes in genes that weaken the connective tissues. At least seven sub-types of the condition are recognised and the way patients are affected can vary significantly. The most common features of EDS are joints with an increased range of movement or hyper-mobility and skin that is unusually stretchy or fragile. In some the symptoms may be relatively mild but others they are highly disabling and on rare occasions potentially life-threatening. The complexity of the syndrome and the difficulty in diagnosing the milder forms of the condition means that an accurate estimate of the number of affected individuals is difficult. The most common form of the condition is believed to affect around 1 in 2000 individuals.
To read more about this petition & to sign it & help reach the 100,000 signatures needed for this to be debated in Parliament click here: https://petition.parliament.uk/petitions/171378
This petition closes on Sunday 7th May 2017