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Big question: Hemophilia/Von Willebrands Disease in Japan?

silver angel

Resident Latina
26 Sep 2003
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Alrighty, many of you know me as a huge Japan lover. I hope to go there someday. Although I have a major problem with travelling out side of Canada. I have what people know as Von Willebrands diease/Hemophilia (it's practically the same thing) My type is Type A (I'm missing factor 8, a clotting factor) and I'm also Severe. 5-0% clotting factor. I'm not too great at explaing so here's some professional information:

What is Von Willebrand Disease?
Von Willebrand Disease (VWD) is the most common bleeding disorder that people have.

In fact, it is not a single disease, but a family of related diseases. All the different types are caused by a problem with the Von Willebrand Factor (VWF). This is a protein in blood which is necessary for proper blood coagulation, or clotting. The genes that make VWF are " turned on " in two cell types in the body:



the lining cells of blood vessels (endothelial cells) and
platelets.
When there is not enough VWF in the blood, or when it does not work the way it should, the blood takes longer to clot.

Is there always a history of bleeding in the family?

Not always. There are several reasons why.

The level of VWF is not the same from person to person even in the same family. As a result, one person may bleed more than another.

Blood type can play a role. People with Type O blood often have lower levels of VWF than people with Types A, B and AB. So people with Type O blood may have more problems with bleeding.

Doctors believe there are other factors that also affect how severe symptoms are, but they are not yet well-known.

There may be no history of the disease because no one in the family has it. The baby could have gotten the abnormal gene through a new mutation. In this case, chromosome 12 changes at conception or soon after. That baby's parents are normal. However, the baby, after growing up, could the pass on VWD to its children.


I got it through a mutated gene. No one in my family has it. So, my question is, Does anyone know a female with Von Willebrands (severe?) It's actually rarer that the info says, I've never met a female with my condition. And my other question is, Are there any centers in Japan related to this?

Thank you for reading this. 🙇‍♂️

p.s if you have any questions regarding this topic, I'd be happy to answer them for you :)
 
All My Patients Have The Other Way Around!!

They all have to take blood thinners to prevent clotting.
Is it something that stays stable, or changes with age?

Frank
:eek:
 
Frank D. White said:
They all have to take blood thinners to prevent clotting.
Is it something that stays stable, or changes with age?

Frank
:eek:


on average it stays the same. It depends on the life style of those who have it. I've always been severe, so I'm allergic to Asprin (ASA) and any other pain killer besides tylenol. My parents were, and still are rather protective, so sports are usually out of the question. I hope to do tai chi soon though. My condition has never changed so I don't think it'll change anytime soon. :)
 
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