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von Willebrand factor

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12 years 11 months ago #32777 by meredithjane
von Willebrand factor was created by meredithjane
Have just found out my 3 year old grandson has low levels of von Willebrand factor. He had blood tests after several unexplained nose bleeds. Is yet to see haematologist.
I hadn't heard of it before. I understand it is an inherited condition. From brief research it appears von Willebrand factor is the 'glue' protein in platelets that assists in clotting.
No known family history (apart from my ITP) makes intriguing further investigation.
mj

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 11 months ago #32784 by Sandi
Replied by Sandi on topic von Willebrand factor
Sorry to hear that, MJ. I've heard of it; it's listed on the PDSA as an inherited bleeding disorder.

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12 years 11 months ago #32828 by KayL
Replied by KayL on topic von Willebrand factor
I have a close friend who has vW. We love to share blood stories now.

He's had vW his entire life (he's 25 now), and it has only ever been a problem when he's going to have surgery or a medical procedure done. He had his tonsils out last year and it was practically a 2 month affair of them making sure he wouldn't bleed too much during or after the surgery.

Much like a kid with ITP, your grandson will be okay. Esp if he only has low levels of the vW factor and not the diagnosis of vW.

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12 years 11 months ago #32875 by meredithjane
Replied by meredithjane on topic von Willebrand factor
Thank you Sandi & Kay,
My information says that vW affects 1 in 100 people so I was surprised to know little about it.
Always something new to learn about our amazing human body!
mj

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 11 months ago #32915 by karenr
Replied by karenr on topic von Willebrand factor
Don't vW folks carry around little sprays or something that protect them if they have a bleeding episode?

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Platelet Disorder Support Association

Platelet Disorder Support Association
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