Re: New EDS Numbers- vascular

[Guest guest]

This is what Dr. Schwarze or Pepin said at the Medical Talks

on Saturday in Buffalo.

In their lab:

40% of those diagnosed type IV (vascular) are new cases- w/no family

history.

They do not have any false positives.

70% have complication by 30-35 yrs of age -most being arterial. 25%

with a valve or sigmoid perferation. Heart and spleen involvement as

been seen as well.

Their lab has 25-30 new IV cases in the USA per year.

****My notes say 1:5000-50,000, I am not sure if that is VEDS to

general population or EDS population----next conference I am bringing

a tape recorder*******

They feel that because of the way the search for samples are done

that numbers are under-estimated.

50% die by 45 per the subjects they had on record in 2000.

Later Byers, Pepin and Schwarze stated that since they see these

cases after a complication or early death in the subject or a family

member that its possible we are reporting the early death ages to be

approx 10 years earlier than the actual average if we could know

those who dont have complications and therefore no diagnosis.

kim b