von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience as they search for concrete answers to their symptoms. Dr. Ng answers questions from our listeners with a thoughtful and compassionate approach to a complex disorder. Join us for a special episode of Ask the Expert developed for our vWD community!

Welcome to Episode 34 - or our vWD Research Update Episode - of the Ask The Expert Podcast! 

There are several national conferences for von Willebrand patients and their caregivers, as well as online resources. Check out the following resources for more information:

Foundation for Women & Girl with Blood Disorders http://www.fwgbd.org/

NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: https://www.arizonahemophilia.org/now/

Victory for Women: https://victoryforwomen.org/

vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: https://vwdconnect.org/

National Hemophilia Foundation hosts a vWD track at the National Conference: https://www.hemophilia.org/

 

“An accurate vWD diagnosis could take multiple times because it can be affected by patient stress, heavy exercise or inflammation.” Dr. Christopher Ng, M.D.

 

“vWD researchers are looking beyond just levels - they are looking at other genetic makeup that could affect bleeding.” Dr. Christopher Ng, M.D.

 

“vWD and platelets work together as a team to start the clotting process - you need both and they are hard to tell apart. .” Dr. Christopher Ng, M.D.