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How come many patients with clinical EDS diagnoses do not test positive yet have vascular issues? |
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The "vascular events" that occur in Vascular EDS (VEDS) include
arterial dissection, arterial rupture, arterial aneurysm, organ
rupture. When these occur, the result may be an infarct (loss of blood
supply), a bleed into an open space or an organ, or an occlusion. In
addition to these events, individuals with VEDS often, although not
always, have a lifelong history of easy bruising. Any or all of these
vascular problems can occur in the absence of VEDS, in a "normal"
individual. When they do occur, they may occur at a later age than in
VEDS or to a lesser degree or much less often. The challenge, for the
physician, is to sort out whether the "vascular event' that the patient
describes or experiences is a consequence of normal aging and
living, or the consequence of an underlying collagen disorder. The same
issues apply when considering vascular events in people with other
forms of EDS. If a person with Hypermobile EDS experiences a vascular
event, the physician will need to consider whether this is coincidence
or an association. The research studies that could be done to determine
if individuals with other forms of EDS are at increased risk (as
compared to the general population) have not been done. Answered by: Melanie Pepin, MS, CGC.
Bruising is common; vascular rupture, dissection, etc., are not in other forms of EDS. Peter Byers, MD.
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