We all have obstacles to overcome to make a difference and increase EDS awareness. This symposium is the first scientific meeting dedicated exclusively to the treatment of Ehlers-Danlos Syndrome. In fact, EDS is still largely ignored by the medical profession and often go unrecognized, so that the average delay between onset of symptoms and diagnosis is estimated as 20 years. This leads to difficult situations for patients and families, who often embark on a road paved with obstacles.
Wandering from one diagnosis to the next, they are sometimes exposed to aggressive treatments that may adversely affect their functional and social autonomy. These may include: immunologic treatments, corticosteroid therapy with disastrous effects, mutilating and disabling surgeries reaching the outstanding number of 45 surgeries for one patient! When diagnosed, it is often neglected, due to a commonly held misbelief that EDS is benign.
Consequences are denial of medical attention and refusal to provide health care. However, Ehlers-Danlos Syndrome does not require any treatment, and, therefore, does not fall within the scope of exemption of co-payment by social security". This symposium proved the exact opposite: Treatments for Ehlers-Danlos Syndrome do exist! They often provide significant improvement in the life of patients, considering the unpredictable evolutionary process of the syndrome and the difficulty to manage certain crises.
Ignorance of the disease and its diagnosis, and therapeutic failures, often lead to inappropriate psychiatrization, expressed, "at best", by the usual phrase "it's in your mind", and responsible, in the worst case scenario, for abusive psychiatric institutionalization.
All attendees expressed their appreciation for an event considered a major step in the History of Ehlers-Danlos. Participants, particularly those directly affected, were glad to realize that they were no longer fighting alone against ignorance and denial.
