#14: Though genetic testing is available even if the results are negative it cannot rule out the possibilty of EDS. This is because not all of the disorder causing mutations and variants have been identified, meaning that just because you don’t have a mutation known to be associated with EDS doesn’t mean you don’t have one that is as of yet undiscovered. This is why physical examination and clinical presentation is so important.
#15: There is no cure for EDS. Treatment is merely supportive and includes continual, close monitoring of the neccesary body systems and treating individual symptoms as they present whenever possible. Physiotherapy, occupational therapy, and orthopedic instruments can also prove helpful.
#16: Surgery is often needed in order to stabilize extremely loose joints and help prevent them from subluxating and dislocating. Because of the known fragility of the tissue in EDS as well as the poor, slow and sometimes incomplete wound healing the pros and cons of such procedures must be thoroughly measured. It’s also very important to have a surgeon who is knowledgeable of EDS and the different steps that should and can be taken to help ensure the best possible outcome and prevent further tissue damage.
#17: Currently EDS is estimated to occur in 1 out of every 5000 births worldwide, equally effecting men and women of every race and ethnicity.