Re: Need Links to Vonwilebrands Disease specialists

My husband and daughter both have Von Wilebrands type 2b. My husband gets frequent nose bleeds and has found that the ingredient in Nostrilla helps with clotting. His hematologist has said that it would even help with my daughter's heavy periods. We haven't tried it yet on her. Whenever my husband needs surgery, he gets a pre-op and post-op infusion of humate to help with bleeding. When he had surgery to repair a torn bicep, he had a preop infusion of humate and his surgeon reported less bleeding than he's used to seeing in this type of surgery.

What type does your friend have? A large hematologist practice should be familiar with Von Wilebrands. Hematology.org has info on VW and my husband used to get a subscription to Blood Stone a magazine put out by the Nationial Hemophilia Foundation. They have information on VW here: http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=182&contentid=47...


A large hematology group or a trauma hospital should know about Von Wilebrands and its treatment options.

She might want to get in touch with the Hematology department of Birminham hospital in Alabama. A retired doctor there (Rostagi - not sure of the spelling) was one of the primary reseachers of VW and diagnosed my mother-in-law and my husband. They might be able to refer her to someone in MO who is familiar with VW or at the very least be able to provide her hematologist with information.

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