World Hemophilia Day – Reaching Out

Highlights:

  • World Hemophilia
    Day is observed worldwide on the 17th April to raise awareness
    about this little known inherited bleeding disorder and ensure treatment
    is available to every patient across the world
  • Hemophilia is an
    inherited condition marked by prolonged potentially life-threatening bleeding following even minor trauma. It is a rare
    condition and about 400000 persons are estimated to be affected worldwide
  • World Hemophilia
    Day 2019 aims to reach out as far and wide as possible to ensure proper
    diagnosis and treatment to nearly 75 percent of patients who still remain undiagnosed or don’t have access
    to treatment

World
Hemophilia Day is observed on the 17th April worldwide to raise awareness about this little known inherited bleeding
disorder.
The aim is to raise and spread awareness about hemophilia and
other bleeding disorders and achieve the goal of ‘Treatment
for All.’

History
of World Hemophilia Day

The first hemophilia
awareness day was first established in 1989 and is sponsored by the
World Federation of Hemophilia (WFH). The organization was founded by Frank Schnabel, and the date 17th
April was chosen as his birthday falls on this day. The awareness color for hemophilia has been aptly chosen as red color.

The World Federation
of Hemophilia (WFH) was founded in 1963
and has partner organizations in about 140 countries and is
officially recognized by the World Health Organization.

‘World Hemophilia Day 2019 is focusing mainly on reaching out as far and wide as possible to try and identify more patients who remain undiagnosed so that they can receive appropriate treatment and help in achieving the goal of ‘Treatment for All.’’
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WFH has
consistently been crusading for over 50 years to improve diagnosis and availability of treatment resources for
persons with inherited bleeding disorders such as hemophilia, von Willebrand disease ,inherited platelet
disorders and rare clotting factor deficiencies.

Why
Should We Raise Hemophilia Awareness?

  • Many people in
    the world are unaware of their condition and thus remain undiagnosed or
    have no access to proper treatment for bleeding disorders such as
    hemophilia
  • As per WFH
    estimates, about 1 in every 1000 person has a bleeding disorder and many
    don’t get treatment
  • If not treated
    properly and in a timely manner, severe cases of hemophilia can end in
    premature death. Fortunately, effective treatment options are there and if
    provided, people with hemophilia can lead healthy and productive lives

How
We Can Raise Awareness About Hemophilia

We should all do our bit to raise awareness about hemophilia
and related bleeding disorders so that each and every patient
is diagnosed and receives appropriate treatment. Some of the ways to do this
include the following:

  • Download World
    Hemophilia Day posters from the WFH site and share widely on social media
    such as Facebook and Twitter
  • Persons with
    hemophilia can share their stories on social media and raise awareness as
    well as inspire others with the condition
  • Distribute
    information leaflets on hemophilia to the public in prominent locations in the community such as parks,
    libraries and malls
  • Raise funds to
    support hemophilia research and/or make a personal contribution to
    the campaign
  • Print and visual
    media should provide wide coverage about the condition and invite experts
    to discuss the condition and its diagnosis and treatment
  • Clinics and
    hospitals should offer free screening and check-ups to encourage more
    persons to seek diagnosis and treatment
  • Wear red or light
    up your office space or building in red to show solidarity for the
    hemophilia awareness campaign
  • Sell red themed
    stuff such as mugs, bracelets, T-shirts, pins and other trinkets online
    and donate the proceeds to support the campaign
  • Organize
    walkathons or marathons to raise awareness about hemophilia and raise
    funds

Fast
Facts About Hemophilia

  • Hemophilia Nearly 70 percent of patients
    remain undiagnosed or don’t have access to treatment
  • It
    is not contagious and does not spread from one person to another
  • Hemophiliacs
    are deficient in a protein that is necessary for blood to clot following
    injury. As a result, clotting of blood is delayed and they bleed considerably
    even following trivial injuries
  • Careful
    precautions must be taken before procedures such as dental extraction or
    surgical operations to avoid the risk of bleeding
  • At
    times bleeding can occur internally especially within joints and muscles
    causing severe pain and swelling
  • There
    are two types of hemophilia, namely Hemophilia A where clotting factor VIII is
    deficient and the less common Hemophilia B where clotting factor IX is deficient
  • It
    is estimated that 1 in 5000-10,000 persons in the US are born with this
    condition
  • The
    condition is diagnosed by measuring the levels of these clotting factors in the
    blood
  • Treatment
    is by transfusion of pooled plasma from blood donors rich in Factor VIII and
    Factor IX factors
  • The
    pooled plasma should be tested for blood-borne infections such as HIV and Hepatitis
    B before transfusing since hemophiliacs are at risk of developing these
    infections due to the need for regular transfusions

Summary

World Hemophilia Day is observed on the 17th
April and aims to raise awareness about this rare potentially life-threatening
bleeding disorder and ensure that the majority of patients who still remain
undiagnosed and untreated get diagnosed and access to treatment.

References :

  1. World Hemophilia Day 2019 – (https://www.wfh.org/en/whd)
  2. World hemophilia day 2019- outreach & identification – (https://www.worldhemophiliaday.org/)
  3. Fast Facts About Bleeding Disorders – (https://www.hemophilia.org/About-Us/Fast-Facts)

Source: Medindia