Fact #22: Those with EDS (especially the vascular type) are at an increased risk of arterial rupture (such as aortic dissection) which if not promptly diagnosed and treated can lead to death. If you have or suspect EDS and experience sudden pain in your chest, back, shoulders or jaw (often described as severe and ripping in nature) it is extremely important to seek emergency medical attention. Be sure to divulge your diagnosis and insist that the proper imaging tests be performed – such as an MRI, transesophageal echocardiogram or CT (X-rays and EKGs will not be able to rule out the possibility of arterial rupture or dissection). Do not allow yourself to be dismissed before the possibility of those complications is definitively ruled out.
Fact #23: Raising EDS awareness is extremely important in order to help those with the disorder receive early diagnosis and with it proper management and treatment.
Fact #24: EDS carries many of the same and/or similar symptoms of several other genetic connective tissue disorders such as Marfan Syndrome and Loey-Dietz Syndrome. It is not uncommon to have what appears to be a mix of more than one tissue disorder or for your diagnosis to change later in life from one to the other as more symptoms appear and more is learned about these conditions. This is another reason close monitoring is important.
Fact #25: The mascot/symbol of EDS has become a zebra or zebra stripes. The reason behind this is because EDS is what’s considered a “zebra diagnosis” aka a surprise, rare diagnosis. This is based on the saying “when you hear hoofbeats behind you, don’t expect to see a zebra” because the more likely and logical explanation would be that they belong to a horse.