April 17 is World Hemophilia Day. It’s a very important day for bleeding disorder communities because increased consciousness can help in better diagnosis of the disease. Also, public awareness can be instrumental in making sure that millions of people with hemophilia have access to adequate care.
The World Hemophilia Day campaign began in 1989 and was first presented by the World Federation of Hemophilia (WFH). For thirty years the international campaign highlights the importance of taking coordinated and concerted actions to achieve WFH’s vision of “Treatment for All.”
This year, the celebration focuses on the entire bleeding disorders community, and they decided to go with the theme: “Get+involved.”
So what is hemophilia? How can you get it, what are its symptoms, and how can you treat it? Read on to find out the answers.
Hemophilia is a rare and inherited bleeding disorder in which a person’s blood does not clot properly.
Normally, when a person gets a small cut, the bleeding stops almost immediately. People with hemophilia, on the other hand, bleed easily, and the clotting may not happen for a long time after an injury. Also, people with hemophilia can experience spontaneous or internal bleeding and often have painful, swollen joints due to bleeding into the joints.
This is because the person lacks enough blood-clotting proteins which lead to too much bleeding and can have life-threatening complications.
According to the World Federation of Hemophilia (WFH), about one in 10,000 people are born with this disease and most of the affected persons are males.
WHAT ARE THE CAUSES?
According to Mayo Clinic, Hemophilia is caused by a mutation in one of the genes that contains the instructions for making the clotting factor proteins. The proteins are needed to form a blood clot, and the change in the genes can prevent the clotting protein from working properly or to be missing altogether. These genes are located on the X chromosome, that is why males are the usual patients.
WHAT ARE THE SIGNS AND SYMPTOMS?
The signs and symptoms of hemophilia may vary, depending on your level of clotting factors. If your clotting-factor level is just mildly reduced, you may bleed only after surgery or trauma. If your deficiency is severe, however, you may experience spontaneous bleeding.
Here are the signs and symptoms of spontaneous bleeding:
- Unexplained and too much 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
- In infants, unexplained irritability
HOW WOULD YOU KNOW IF YOU HAVE IT?
If you have or have had family members with hemophilia, it is a good idea to ask that your baby boys get tested soon after birth.
To diagnose if a person have it, doctors would perform certain blood tests to see if the blood is clotting properly. If it does not, then they would do clotting factor tests, aka factor assays, to find out the cause of the bleeding disorder. These blood tests would show the type of hemophilia and severity.
WHAT IS THE TREATMENT FOR HEMOPHILIA?
The best way to treat hemophilia is the regular replacement of the specific clotting factor that is reduced so that the blood can clot properly. This is done by infusing commercially prepared factor concentrates through a vein.
People with hemophilia can learn how to perform these infusions themselves so that they can stop bleeding episodes and, by performing the infusions regularly (called prophylaxis), can even prevent most bleeding episodes.
Good quality health care from providers such as doctors and nurses who know a lot about the disorder can help prevent some serious problems. Often, the best health care option is to visit a comprehensive Hemophilia Treatment Center (HTC). HTC provides care to deal with all issues associated to the disorder. Additionally, it provides health education to help enlighten people with hemophilia on what to do to remain healthy.
ORGANIZATIONS AND PROGRAMS THAT SUPPORT THE HEMOPHILIA COMMUNITY
The Global Alliance for Progress (GAP) Program was launched on World Hemophilia Day of 2003. It was developed to greatly increase the diagnosis and treatment of people with bleeding disorders. This can be done by closing the gap in the treatment of people with bleeding disorders. The GAP also aims to close the gap in treatment between developed and developing countries.
WORLD FEDERATION OF HEMOPHILIA
The WFH’s aim is to make certain that persons including those living with hemophilia and von Willebrand disease (VWD), those with rare factor deficiencies, and women with bleeding disorders —have access to high-quality care and recognition of their condition”.
To do this, they came up with a Strategic Plan for 2018 to 2020 which considers the global opportunities and challenges facing the bleeding disorders community along with our organizational strengths. For many years now, the incessantly IMPROVE OUTREACH AND DIAGNOSIS of people with bleeding disorders, INCREASE ACCESS to adequate and affordable care, and INCREASE SUSTAINABLE ACCESS to safe therapies
This year, due to the COVID-19 pandemic, they encourage their supporters to celebrate World Hemophilia Day with friends and family at home.
On April 17, you can still participate virtually and “Get+involved” on April 17 in a way that is safe for you, your family, and your community.
For more questions regarding the best way to stay safe and engaged on World Hemophilia Day, you can contact Erika Laincy, WFH Marketing & Communications Manager, at [email protected]