von Willebrand
Disease
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Uploaded
22 Jul 2008

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Having been told that a relative had acquired a 'rare blood disorder', we were fortunate enough to have found on the internet a case record of acquired vWD in an 83 year old woman. It was printed and taken with us to the hospital on the morning that we were told of the diagnosis and was helpful in enabling understanding that positive diagnosis was difficult and that problems were likely in finding the right treatment for this acquired haemophilia. These links and the information we found for von Willebrand Disease in humans may be helpful to relatives of newly diagnosed patients seeking information about it, and in particular the acquired type, which is a rare disease.

There is a link to a 'Care letter' that we found very helpful to have available at all times since not all medical care staff have full knowledge of the disease and a history, upon emergency admission to hospital, is very useful.

Please contact me if you have any stories or information to share with others.

Links: from a search on http://www.google.com

An 83-year-old with Post Operative Bleeding:
http://path.upmc.edu/cases/case285/dx.html
 
Information and Links for von Willebrands:
http://www.mindspring.com/%7Emattrk/
 
Stories & Letters:
http://www.shemophilia.org/community/stories.html
 
Useful explanations:
http://www.hemophiliagalaxy.com/1_PATIENTS/ENCYCLOPEDIA/index.html
 
Baxter Healthcare Organisation - great hemophilia site:
http://www.hemophiliagalaxy.com/
 
Information on vWD:
http://www.haemophilia.org.za/Vonwil2.htm
 
Care of patients with von Willebrand disease (vWD):
http://nsweb.nursingspectrum.com/ce/ce222.htm
 
von Willebrands Fact Sheet:
http://www.hrahemo.com/Patients_Bleeding_Disorders.html
 
'A Guide to Living with von Willebrand Disease' - free book available from:
http://www.kelleycom.com/books_corpsponsor.html                                                                        

SOME LINKS TO FIND OUT ABOUT PRESCRIBED MEDICINES:

Medlineplus: Excellent!
http://www.nlm.nih.gov/medlineplus/druginfo/drug_Aa.html

 

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