JMHSK - Dedicated to helping those who suffer from hemophilia

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Fast facts

Hemophilia

  • Hemophilia occurs in 1 in 6,000-10,000 males internationally.
  • Currently in Australia there are around 3,000 people with varied degrees of severity.
  • There are 2 types of Hemophilia:
  • Hemophilia A(classical Hemophilia) is the most common type and caused when there is not enough clotting factor VIII in the blood.
  • Hemophilia B(Christmas disease) occurs when there is not enough clotting factor IX in the blood.
  • Bleeding is most commonly internal into the joints and/or muscles. It can happen without an obvious cause (sometimes called ‘spontaneous’), or as a result of injury.
  • Over time this internal bleeding ('bleeds') can cause severe arthritis, chronic pain and disability.
  • Specialised treatment is needed to help blood clot normally. With appropriate treatment Hemophilia can be managed effectively.
  • Hemophilia is an inherited condition and occurs in families; however in 1/3 of cases it appears in families with no previous history of the disorder. The genetic alteration causing hemophilia is passed down from parent to child through generations. Men with Hemophilia will pass the gene on to their daughters but not their sons. Women who carry the gene can pass the gene on to their sons and daughters. Sons with the gene will have Hemophilia. Some women and girls who carry the gene may also experience bleeding problems.


Von Willebrand disorder

Von Willebrand disorder (VWD) is a related bleeding disorder which affects both men and women. This disorder is caused by when there is not enough von Willebrand factor in the blood or it does not work the way it should. It takes longer for blood to clot and for bleeding to stop.

 

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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