JMHSK - Dedicated to helping those who suffer from hemophilia

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Von Willebrand Disorder

What is von Willebrand Disorder (VWD)?

Von Willebrand Disorder (VWD) is due to a deficiency of von Willebrand Factor (VWF). VWF a plasma factor that circulates in the blood attached to Factor VIII. The major function of VWF is to bind platelets, small cell fragments in the blood, to minor ruptures in blood vessels.

VWD is inherited but in a different manner to hemophilia. It affects women as often as men. The abnormal gene is not on the X chromosome (sex-related chromosome), but on the autosome (a regular chromosome, not a sex-related chromosome). A few people with severe VWD have two abnormal genes, one from each parent.

Most people with VWD have a mild-to-moderate form. In some families, VWD appears to be inherited as a dominant condition due to one abnormal gene from one parent (who may or may not have bleeding problems). However, in other families, VWD may be inherited as a recessive, with abnormal genes from both parents but no bleeding problems.

Both men and women with VWD often are frustrated because mild cases of the disorder may be difficult to diagnose. This is the most common bleeding disorder and affects an estimated 200,000 people in Australia, most of who are undiagnosed.


How is von Willebrand Disorder inherited?

Von Willebrand disorder is mostly a genetic disorder. This means it is passed down through the genes from parent to child. The abnormal gene in von Willebrand disorder is on one of the regular chromosomes, not on one of the sex chromosomes (like haemophilia). This means that, unlike haemophilia which usually affects only males, von Willebrand disorder affects males and females in equal numbers.

 

In what is called the classical inheritance pattern, the von Willebrand disorder gene is usually dominant. This means a parent who has von Willebrand disorder has a 50% chance of passing a von Willebrand disorder gene along to each of his/her children. Types 1 and 2 von Willebrand disorder are usually inherited in this way.

In the less common inheritance pattern, two parents, each with von Willebrand disorder but without symptoms (called asymptomatic), may together have children who are severely affected by von Willebrand disorder. This form of inheritance is called "recessive". Type 3 von Willebrand disorder is usually inherited in a recessive pattern. Many people carrying the von Willebrand disorder gene are asymptomatic which means they will not have bleeding symptoms, but they can still pass the disorder on to their children.


How is von Willebrand Disorder treated?

Most people with mild von Willebrand disorder will only experience a mild form of the condition and no medication will be required except when having surgery, and/or dental extractions. Far more serious bleeding may need to be treated with infusions (injections) of medications (synthetic hormones) or blood clotting products into a vein or sprays and tablets. People with von Willebrand disorder should not take aspirin in any form because it aggravates bleeding.

 

About Us


The purpose of the society is to provide service and support to persons with hemophilia or other clotting disorders and their families. Read more

Our Programs


JMHSK runs a number of programs aimed at education; support and offering affordable medical help to those living with hemophilia. Read More

 

Annual Events


17th April: We celebrate World Hemophilia Day

25th April: Family Day as it marks Jose Memorial Day

How you can help


We rely on the generous support of individuals and groups to provide services, education and support for people living with hemophilia and other bleeding disorders. Read More

 

 

 

 

 

 

 

Our Team Our Team

 

Our Vision

Healthy, active and empowered citizens living with Hemophilia

 

Our Mission

To provide comprehensive care, medical support and service to people with Hemophilia through registration, provision of treatment, education and training.

 

Our Programs

Medical Programs


One of the Society’s ultimate goals is to provide comprehensive care meaning that along with factor replacement therapy, patients receive physiotherapy, dental hygiene, genetic counselling, diagnostics, psychosocial therapy, orthopedics and surgical care. 

Organizational Programs


The society was launched on 17th April 2009 during the World Hemophilia Day (WHD) at the MP Shah Hospital to give it credibility and to create awareness on a wider scale. The media was present at the launch in an effort to inform the public of the presence and purpose of the society.

Family Programs


In Kenya, the pressure to provide basic medical care leaves families on the sidelines. Many families are reluctant and afraid to assert their needs and have thus learnt to be helpless and hopeless, and suffer in silence.

Government Lobbying


The society cannot achieve its vision of comprehensive Hemophilia care without the government’s support. Hemophilia is rare and the government faces other urgent medical needs thus our case can get lost in the many voices crying for government attention.

 

Fund Raising & Public Awareness

 

 

As public awareness on the society is raised, more people will contribute to its success. The society will endeavor to run both of these concurrently to ensure success as they are intimately related. We undertake to identify the stakeholders listed below and create linkages.

Funding source include:

  1. The government
  2. Private Individuals
  3. Corporations and Businesses
  4. The General Public

 

 

 

Useful Links

© 2018 Jose Memorial Hemophilia Society. All Rights Reserved.

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