Von Willebrand Disease
A mind can bleed a heart to death - Munia Khan
image by: Daniela Delgado
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Better Than Before: A Hypochondriac Discovers von Willebrand Disease
The worst thing you can tell a hypochondriac such as myself, is that there is another illness out there waiting to be experienced. Case in point: The little-known bleeding disorder, von Willebrand Disease (vWD). While it sounds like something you can only catch from effete German aristocrats, it is, in fact, named after Erik Adolf von Willebrand, a Finnish pediatrician who first discovered it in 1926.
And the only reason I am writing about it now, is that it turns out that I know someone who actually suffers from it, and she recently described her symptoms to me. (Note: When innocents start doing this and my husband, The Lawyer, is present, he desperately, tries to stop them before…
Resources
Testing
A workup for von Willebrand disease (VWD) initially involves evaluation of von Willebrand factor (VWF) quantity and function and factor VIII (FVIII) activity. Specific laboratory tests include VWF antigen, VWF ristocetin cofactor (VWF:RCo) activity (or another activity assay), and FVIII activity tests. The National Heart, Lung, and Blood Institute (NHLBI) and American Society of Hematology (ASH) guidelines designate levels of either VWF antigen or VWF:RCo <30 IU/dL (30% of normal) as diagnostic for VWD, regardless of bleeding, and a level of <50 IU/dL with abnormal bleeding as confirmatory for the diagnosis of VWD.
Von Willebrand Disease: the Under-the-Radar Bleeding Disorder
Constant nosebleeds, persistent bruising and super-heavy periods are signs you shouldn’t dismiss.
Advances in the diagnosis and treatment of Von Willebrand disease
VWD is of course not the only cause of mucosal bleeding. Acquired VWD, platelet-type VWD, platelet function defects, vascular malformations such as hereditary hemorrhagic telangiectasias, and connective tissue disorders must be considered in the differential diagnosis.
Dangers of a little-known clotting disorder
MOST people know of the inherited bleeding disorder hemophilia. But von Willebrand's disease, a far more common clotting disorder, is little known. Hemophilia afflicts one man in 10,000, but von Willebrand's may affect as many as one in 100 men and women, often causing frequent nosebleeds, bleeding gums, easy bruising and excessive menstrual flow. Unlike hemophilia, it is not usually life-threatening.
Developments in the diagnostic procedures for von Willebrand disease
Von Willebrand disease (VWD) is the most common inherited bleeding disorder but its diagnosis can be challenging due to the heterogeneity of the disease. VWD is mainly associated with mild mucocutaneous bleeding, although there are more severe phenotypes with bleeding from the gastrointestinal tract or even the joints. Also, surgical interventions and trauma may lead to critical bleeding events. These bleeding episodes are all related to quantitative or qualitative defects of von Willebrand factor (VWF), a multimeric glycoprotein produced by endothelial cells and megakaryocytes,
Iron Butterfly: Von Willebrand disease and a mother’s memories of her daughter
Von Willebrand disease and a mother’s memories of her daughter.
My Baby Brought Me Joy and a Life-Altering Diagnosis
Despite the condition's prevalence, the five common signs and symptoms go unnoticed or misdiagnosed.
Understanding von Willebrand Disease: Do You Know the Signs?
Early diagnosis of VWD is important to ensure that you receive proper treatment and continue to live an active and fulfilling life. However, VWD can be tricky to diagnose.
“I Have Von-What Disease?” Von Willebrand Disease Explained
Because the symptoms can be mild, many people never realized they had an actual disease all their lives. They thought their symptoms were just something they had to live with. (Incidentally, people with VWD often outgrow the nosebleeds by adulthood, but they still have the disease even without this symptom present.)
Better Than Before: A Hypochondriac Discovers von Willebrand Disease
The worst thing you can tell a hypochondriac such as myself, is that there is another illness out there waiting to be experienced. Case in point: The little-known bleeding disorder, von Willebrand Disease (vWD).
LivingWithVWD.org
Our mission is to provide a safe place for anyone affected by Von Willebrand's Disease to connect with others.
Von Willebrand & U
Welcome to Von Willebrand & U! This page provides essential information about von Willebrand disease (VWD), and is dedicated to the VWD community.
Von Willebrand's Disease and Survival
Von Willebrand's Disease is a genetic bleeding condition. Life becomes a challenge for girls and women with Von willebrand's disease. Survival remains a big question. VWD has become my identity to some extent. It has also given me opportunity to discover my inner self and understand the reason of my survival on this alluring planet - Earth.
DDAVP
Stimate Nasal Spray stimulates von Willebrand factor and factor VIII. Most commonly prescribed for those with type 1 VWD or mild hemophilia A, DDAVP works by stimulating release of both VWF and factor VIII found in storage sites lining the blood vessels.
Humate-P
Humate-P is a VWF/FVIII replacement therapy that delivers results, patient after patient, treatment after treatment, decade after decade
Stimate
To maintain hemostasis or to stop bleeding in Hemophilia A and mild-to-moderate Type I von Willebrand Disease (VWD), each with Factor VIII levels >5%.
National Heart, Lung and Blood Institute
VWD is more common and usually milder than hemophilia. In fact, VWD is the most common inherited bleeding disorder. It occurs in about 1 out of every 100 to 1,000 people. VWD affects both males and females, while hemophilia mainly affects males.
CDC
Von Willebrand disease (VWD) is an under-diagnosed blood disorder in which the blood does not clot properly. It occurs with equal frequency among men and women. Although there is no cure for VWD, treatment can control symptoms and help people avoid problems.
Hemophilia.org
VWD is the most common bleeding disorder, affecting up to 1% of the US population. It is carried on chromosome 12 and occurs equally in men and women.
Life in the Fastlane
Resource for professionals. Responders should have DDAVP for prophylaxis and bleeding. Non-responders should have factor VIII concentrates or cryoprecipitate, can also use tranexamic acid 20mg/kg IV TDS.
MayoClinic
The cause of von Willebrand disease is a deficiency in or impairment of a protein called von Willebrand factor, an important component in your blood-clotting process. In general, it takes longer for people with von Willebrand disease to form clots and stop bleeding when they're cut. Treatment of von Willebrand disease focuses on stopping or preventing bleeding episodes, typically by using medications. With the right treatment, most people with von Willebrand disease can lead relatively normal, healthy lives.
NHS
Three main treatments are available to either prevent or treat bleeding: •desmopressin – available as a nasal spray or injection •tranexamic acid – available as tablets, a mouthwash or an injection •Von Willebrand factor concentrate – this is purified from human plasma (from donated blood) and is given directly into a vein.
NoExcuses
I have just been diagnosed with Von Willebrand's disease (because one rare genetic illness isn't enough for me apparently) and I'm hoping my story might help others.
NORD
Von Willebrand disease (VWD) is a common inherited bleeding disorder in the general population affecting males and females equally, but women may be disproportionately impacted due to the bleeding challenges of menstruation and childbirth.
Patient
This is the most common hereditary coagulopathy in humans. It can be congenital or acquired. It was described in 1926 by Erik von Willebrand in inhabitants of the Aland Islands in the Sea of Bothnia between Sweden and Finland. It was called 'pseudohemophilia' but later became known as vascular haemophilia.
TeensHealth
A substance in the blood called von Willebrand factor helps platelets stick to damaged blood vessels. Special proteins known as clotting factors are also needed to help blood clot — von Willebrand factor includes one of these clotting factors, called factor VIII. People with vWD have bleeding problems because the levels of von Willebrand factor or factor VIII in their blood are abnormal. In some cases, the factors don't work the way they're supposed to.
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