is an X-linked, recessively- inherited clotting disorder
that was called the
"disease of the kings" as it occurred among the male descendants of Queen Victoria across Europe.
Today, it is found to be widely prevalent
among all ethnic groups and races
The theme for the World Hemophilia Day
2011--- "The Many Faces of Bleeding Disorders: United to Achieve Treatment for
hopes to celebrate the support for positive changes in those with
bleeding disorders such as hemophilia,
hemophilia carriers, those with von
, other factor deficiencies
, and inherited
Efforts will be
taken to work together for a better future, and achieve the target of
"Treatment for All".
Hemophilia is a chronic
bleeding disorder that persists throughout the affected person's life.
People with bleeding disorders such as
hemophilia either lack adequate amounts of a particular clotting factor
which is actually a protein that is present in blood to control bleeding, or,
have clotting factors that do not work properly.
Hemophilia is of two types
-Hemophilia A and Hemophilia B.
Hemophilia A (Classical
hemophilia) patients lack clotting
Hemophilia B patients lack
clotting factor IX
or the Christmas
The severity of the
disease usually depends on the amount of
that is absent or dysfunctional.
Hemophilia is more common
in males than in females and is usually identified by the age of 5-6 years. It
can be diagnosed by assessing the levels of clotting factor.
In hemophiliacs, and other
bleeding disorder patients, even minor injuries, bump or a fall can trigger prolonged bleeding
an injury or a surgery. They even experience uncontrolled internal bleeding
without an external sign of bruise.
When the bleeding takes
place into the joints and muscles it causes severe pain
and even disability. If the bleeding occurs inside
major organs, such as the brain, it may even lead to death.
On World Hemophilia Day 2011, inspiring
stories of people with bleeding disorders will be shared by patients and health
care providers who are committed to improving the lives of individuals with
There would be an attempt at focusing on
the discrepancies in treatment across
and how people can live normal lives if proper treatments were
provided to them.
How can we help?
intravenous injections have helped to control the disease to a large extent;
nevertheless the management of the disease has always been very complex.
Each of us can do our bit
to help these unfortunate patients and can even contribute to saving their
lives. The first step would be to understand the disease, especially if we have
a child or a dear friend with the disease.
Spreading awareness about
Hemophilia, with inputs in the form of first or second hand real life stories
or blogging about those with hemophilia can always help to create better
awareness of the disease.
Some tips for those with
bleeding disorders -
• Get vaccinated for hepatitis A and B
• Treat bleeding early
• Check for infections
• Do yearly check up
• Exercise to maintain optimum weight