VWD News: Herbal Remedies

Horizons in Hemophilia, Winter 2009

By Penny Kumpf, RN, VWD Community Outreach Nurse

In a quest for good health, you may be taking some vitamins and supplements and trying to live a healthy lifestyle. Since we live in a world where we are bombarded by advertisements for medications, vitamins, supplements and cure-alls, you may wonder if there is something else you can take or do to treat your bleeding disorder. But you have to think about what you are using to support that healthy lifestyle. Is it helping, hurting, or a waste of money?

On June 3, 2008, the World Federation of Hemophilia’s (WFH) Medical Advisory Board issued a statement about two herbal treatments for von Willebrand Disease called Wilbrintin and Willetab. Each product’s website makes claims about effectiveness. “Thousands of patients have been successfully treated…” “The amazing 100% guaranteed treatment for von Willebrand Disease that is bound to leave you amazed.”

One site claims that their product has been “proven beyond any doubt.” Are you familiar with the saying: “If it seems too good to be true, it probably is”? In their statement, the WFH said: “The Medical Advisory Board does not support the use or marketing of these products for the treatment of a potentially serious condition such as von Willebrand Disease in the absence of any supporting evidence of clinical efficacy or approval by the usual pharmaceutical regulatory agencies.”

They go on to explain that these products are marketed by European companies and can be sold without review or a license from the European regulatory authorities. No supporting data from clinical trials are available for either product. As always, if you have a bleeding disorder you should contact your hematologist before taking any new medications—prescription, over the counter, or herbal remedies.