Improved awareness has increased diagnosis rates, and as more medical papers are published about EDS, the statistics will
continue to change and it will become more and more common, just as it has done over the last couple of decades.
So, what’s the harm in using the word ‘rare’ when it comes to Medicine?
Picture the scene…You have Ehlers-Danlos/Hypermobility Spectrum Disorder (EDS/HSD). You've seen doctor after doctor and have a string of unpleasant experiences behind you. You walk in to the office of a new physician and say ‘I have a rare connective tissue disorder called Ehlers-Danlos'. Before anything else happens, a few things already have…
Unless professionals are confident in their knowledge of EDS/HSD, and if they're not of humble character, using ‘rare’ immediately puts a medical team on uncertain ground and under pressure to perform. This is fine if they’re open to a quick Google (which is all it takes) and to reading, but it can be disastrously bad if they’re running on insecurity and ego instead. Medics who feel their expertise is inadequate or under question often refuse to listen, research and provide what’s needed. In this circumstance, EDS/HSD patients are all too often invalidated and dismissed as exaggerating their symptoms at best, or a fabricated Illness case at worst. Either way, the medicine field marks them as liars, and their care suffers or even grounds to a halt.
When conditions are uncommon, expectations are lower. The patient can’t expect staff to know how to treat and manage them, or even how to carry out the correct investigations. As soon as medical teams hear ‘rare’, they’re aware that the usual investigative and treatment protocols are probably out of the window (not to mention the budget) and adaptions need to be made. NHS Health Trusts in the UK and insurance companies around the world argue over agreeing to fund appointments and treatments. Why? Because in their eyes, rare = unknown, unresearched, unproven - and pricey.