World Hemophilia Day (April 17, 2020)

Written by Tabinda Salman | posted in Events | 0 Comments

Every 17th April is recognized as World Hemophilia Day. It was started in 1989 by the World Federation of Hemophilia (WFH) which chose to bring the community together on April 17 in honor of WFH founder Frank Schnabel’s birthday. April 17, 2020 is the 30th anniversary of World Hemophilia Day. This day is celebrated to raise awareness and understanding of hemophilia and other inherited bleeding disorders. The theme of World Hemophilia Day in 2020 is “Get+involved”. We celebrate World Hemophilia Day with joy and festivities annually but this year we want everyone to celebrate the Day virtually due to COVID-19 pandemic. Stay home, stay safe.

To celebrate this day, it is very important for all of us to know what this day is about.

Let’s learn about hemophilia.

WHAT IS HEMOPHILIA?

Hemophilia is a bleeding disorder in which blood doesn’t clot normally because it lacks sufficient blood-clotting proteins (clotting factors). This results in people bleeding longer after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain. Hemophilia is an inherited (genetic) disorder.

TYPES OF HEMOPHILIA

 There are different types of haemophilia like Hemophila A , B and acquired.

Hemophilia A

Hemophilia A is an X-linked, recessive disorder caused by deficiency of functional plasma clotting factor VIII (FVIII), which may be inherited or arise from spontaneous mutation.

Hemophilia B

It is an inherited, X-linked, recessive disorder that results in deficiency of functional plasma coagulation factor IX. Spontaneous mutation and acquired immunologic processes can result in this disorder as well.

Acquired hemophilia

It is a rare but potentially life-threatening bleeding disorder caused by the development of auto-antibodies directed against plasma coagulation factors, most frequently factor VIII (FVIII).

According to a research, hemophilia occurs in approximately 1 in 5,000 live births and Hemophilia A is four times as common as hemophilia B while more than half of patients with hemophilia A have the severe form of hemophilia.

SYMPTOMS OF HEMOPHILIA

• Unexplained and excessive bleeding from cuts or injuries, or after surgery or dental work
• Many large or deep bruises
• Unusual bleeding after vaccinations
• Pain, swelling or tightness in your joints
• Blood in your urine or stool
• Nosebleeds without a known cause
• People with hemophilia A often, bleed longer than other people
• How frequently a person bleeds and the severity of those bleeds depends on how much FVIII is in the plasma, the straw-colored fluid portion of blood.

TREATMENT OF HEMOPHILIA

The main treatment for hemophilia is called replacement therapy.

• Haemophilia A can be treated with a hormone, called desmopressin, which can give in the form of an injection into your vein. This drug works by stimulating the factors responsible for the blood clotting process.

• Haemophilia B can be treated by infusing your blood with clotting factors of the donor. Sometimes, the factors may be provided in the synthetic form. These are called recombinant clotting factors.

• Acquired Haemophilia can be treated with plasma infusion. The infusion works to stop profuse bleeding.

There are three levels of severity: mild, moderate, and severe. The severity of haemophilia depends on the amount of factor VIII or factor IX in the blood. The life expectancy of someone with hemophilia varies depending on whether they receive proper treatment. Without adequate treatment, many people with hemophilia die before they reach adulthood. However, with proper treatment, life expectancy for people with hemophilia is less.

On behalf of NAYS Pakistan, we want to spread this message to the general public that, World Hemophilia Day is a unique day and with our efforts we should show the world that we all care and are working to support both patients and caregivers in our community. Let’s come together to show our support for millions of people affected by bleeding disorders.

For further reading; 

http://www.whathealth.com/awareness/event/worldhemophiliaday.html

https://www.worldhemophiliaday.org/

https://www.wfh.org/en/events/world-hemophilia-day

Article: Ms. Sundeela Fayyaz