I have a large number of people in my family with this disorder, they also have Ehlers Danlos syndrome. We have seen it mentioned that it is not related but so many people responded on an Ehlers Danlos page that they also had it. I just wnted to post this to ask if anyone else has this connection. Again Apraxia of speech also linked to Von Willebrand’s disease. What other rare conditions do you also have with Von Willebrands?
I do not have Ehlers or Apraxia of the speech but I had Atrial Septal Defect (ASD - congenital heart defect). My ASD was closed in May 2010. My father who also has Von Willebrands Disease and was diagnosed about 15 years ago with Waldenstrom’s macroglobulinemia.
My son has/had aneurysm,AVM,hydrocephaly,non-moving brain ventricles,shunt and papilledema. Everything was brought on by AVM and VWD has made everything more complicated and more damaging.
My father has Von Willebrand’s Disease (born with it) and diagnosed with Waldenstrom Macroglobulinemia when he was around 60 years old.