17-de-abril-dia-mundial-de-la-hemofilia

As has happened every year since 1989, April 17th marks World Hemophilia Day, in honor of Frank Schnabel, who suffered from the disease and created the World Hemophilia Foundation (WFH) in 1963, whose vision and dedication have been fundamental. to improve the lives of people affected by this disease.

From the entity, they chose the day of his birth to develop a day whose objective is to raise awareness among the population about the pathology.

Hemophilia is an inherited bleeding disorder characterized by a deficiency or absence of certain clotting proteins in the blood, which hinders body's ability to stop bleeding. It is not that you bleed more, but that the clotting process requires more time. This coagulation disorder consists, on one hand, of bleeding lasting longer than usual, and on the other hand, spontaneous bleeding can occur in different parts of the body, generating all kinds of problems, some of them permanent.

This condition is passed from parents to children - of all racial and ethnic groups - through genes linked to the X chromosome, meaning it predominantly affects males, although women can be carriers and pass it on to their children.

According to the latest data collected, 17 people out of every 100,000 suffer from hemophilia A and 6 out of every 100,000 suffer from the most severe form of the disease.

Diagnosis involves laboratory tests to measure the levels of clotting factors in the blood. Additionally, genetic testing can be performed to identify the specific mutation in the genes responsible for the production of clotting factors.

There are 3 types of hemophilia:

  • Hemophilia A: It is the most common type, caused by deficiency of coagulation factor VIII. It represents approximately 80% of all hemophilia cases.
  • Hemophilia B: Less common, caused by deficiency of coagulation factor IX.
  • Hemophilia C: Although it is called hemophilia, it is different from types A and B. It is caused by deficiency of clotting factor XI and is less severe.

What percentage of the population has hemophilia?

Hemophilia occurs in 1 in 5,000 baby boys. Hemophilia A is almost four times more common than hemophilia B and about half of affected people have the severe form of the disease. In the latest global survey, more than 400,000 people with bleeding disorders have been identified.

Treatment options:

  • Replacement of coagulation factors: The main treatment consists of the administration of missing coagulation factors through intravenous infusions.
  • Gene replacement therapy: In some cases, gene therapy may be considered to introduce the missing gene into the patient's cells.
  • Medications to promote clotting: Medications may be prescribed that help increase the production of clotting factors in the body.
  • Preventive treatment: In severe cases or in risk situations, regular infusions of coagulation factors can be administered to prevent bleeding.

What care should patients take?

  • Avoid injuries: Activities that increase the risk of serious injury should be avoided.
  • Follow the treatment plan: It is important to follow the treatment plan prescribed by your doctor, including clotting factor infusions as needed.
  • Control bleeding: In case of bleeding, first aid measures should be applied and medical attention sought immediately if necessary.
  • Avoid certain pain relievers and anticoagulants.
  • Maintain good dental hygiene.
  • Maintain a healthy lifestyle: A balanced diet, regular exercise, and avoiding tobacco and alcohol can help maintain overall health and reduce the risk of complications.
  • Avoid supplements that may negatively affect clotting, such as ginseng, gingko biloba, bromelain, flaxseed, garlic, ginger, and cranberry.

On this day, it is important to remember that the proper management of hemophilia requires collaboration between the patient, family and a specialized medical team, placing emphasis on better control and prevention of bleeding, and adequate prophylactic treatment. And above all, increase public awareness of this condition and promote equal access to treatment for all patients living with hemophilia and other bleeding disorders around the world.

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