Though this talk had a focus on the Vascular Type of EDS (VEDS), Dr. Black covered vascular issues that could effect all EDSers.  The types of vascular issues that are most common in EDS, especially VEDS, are aneurysm, dissection, and pseudoaneuysm.  However, those with EDS can suffer from a spectrum of arterial and venous anomalies including spontaneous dissection and rupture.  These issues are VASTLY under-reported in non-vascular EDS cases.  According to him, much more research most be done on vascular issues in the other types of EDS.  In most cases of patients with VEDS or EDS with vascular issues, an echo-cardiogram is recommended at the age of ten, and then every 5 years thereafter. If an abnormality is found on the echo, Dr. Black recommends follow-up scans every 6 months. 

Dr. Black spoke a bit about a new-ish medication, celiprolol (not currently available in the US).  The effect of celiprolol on prevention of cardiovasular events in VEDS has been favorable, as it seems to dilate the blood vessels of VEDS patients.  However, it is only available in Canada and the EU so far. 

Dr. Black does recommend a low-dose beta blocker to all patients with vascular issues.  However, there are exercise implications for many patients.  He suggests that patients on a beta blocker use a polar heart rate monitor if they are engaging in strenuous exercise.  If the patient's baseline heart rate increases by more than 50%, the patient must stop exercise.
Diane Longo
8/30/2014 12:24:49 pm

Please send me more information my daughter is 26 with sev VEDS


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    Amie K.

    EDS warrior.  Find me on Twitter and Inspire as LilacZebra.  Questions, comments, and/or suggestions?  Email me


    August 2013