Me and my boys have only known for the past couple of years that we have vwd type 1 we don’t really know much about it because we haven’t been given information on it and can’t seem to find anything on line. Now mu oldest son is old enough to understand he keeps asking questions and I can’t answer them so any information would be great thanx
If you had just got diagnosed, then you had grown up without trouble. Your son will grow to be the same.
My son is seven. He made many trips to the ER for his nose bleeds.
When we pray, he said all he wants is to be normal.
My explaination is that we bleeds easier and longer. As he grow up, nose bleeds will go away. It leaves only cut while shaving. So, my son is counting the year until he turns 12
Dear Nithi and Stacey,
If you get on Google and search for von Willebrands disease and NIH or von Willebrands and Mayo Clinic, you can get some general articles that are not to filled with medical jargon. Go the the Grifols website and look for vWD treatment. They make Alphanate and have a nice booklet that outlines the types and treatment protocols. I always have a copy in my Medical Looseleaf that I carry with me to the docs or the ER. Alphanate is concentrated VWF and Factor VIII molecules that help stop severe bleeds. It is sometimes called "Factor". A similar product is P-Humate.
Neither of you mentioned Stimate or Amicar which are coagulant medicines you can carry with you and use when the nosebleeds start. You should discuss these with your Hematologist/internist the next time you visit. For type one vWD nosebleeds and dental mouth bleeds some find one or the other very helpful and save a trip to the ER. The Stimate is an inhaler that you spray in the nasal passages. I have type three vWD and Stimate isn't too effective.Most people get relief in an hour or two. In the ER, you will hear "ddavp" or Desmopressin" mentioned. That is what is in Stimate.
Aminocaproic acid is Amicar.
When using the Internet, beware of sites that will try and sell you vitamins and such. There are a lot of "Medicine Shows" out there pushing snake oil.
I use PubMed for professional articles and I try to look for articles that say "cited by "x" " indicating that the professionals are using that article.
Keep asking questions on this site and I will try to find someone to answer them!
John the elder.....
Great reply John...Stacey, it's overwhelming to get the diagnosis at first, especially because it involves your children. But Type 1 is something they can live a long and comfortable life...with an awareness of those areas where they have to be careful. As John said, both Amicar (pills) and Stimate (nasal spray) can be very effective in Type 1, especially when it comes to dental work. There are a lot of folks out here with Type 1, living long and healthy lives.
Dear Stacey..... and others new to the group....
http://www.healthline.com/health/von-willebrand-disease#Overview 1
has a nice set of explanations about vWD and does not use the medical jargon that is so confusing
http://www.nhlbi.nih.gov/guidelines/vwd/4_managementofvwd.htm
This site has a more complex and complete article but a Wikepedia window might be necessary to look up some of the technical terms. I often have two windows open, one on the article and one on google. I switch back and forth!!
I posted a short list of technical terms in another discussion. Feel free to contribute some more terms or post questions.
John the elder... type III vWD.... experimenting with IVIG therapy
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