The World Hemophilia Day is held on April 17 every year starting from 1989 to raise awareness on hemophilia and other bleeding disorders. This particular date was chosen to honor Frank Schnabel, the founder of the World Federation of Hemophilia.
With more than 400,000 people suffering from hemophilia, the day holds a special significance. It brings together the entire community to commemorate the continuous progress in the treatment of hemophilia and other bleeding disorders.It also raises awareness and brings the attention of the leading health care providers on the need to extend proper health care to the wider population.
What is Hemophilia?
Hemophilia is a hereditary bleeding disorder. It occurs when the genes in charge of producing clotting factors become mutated. Due to the inefficacy of the blood to clot properly, hemophilia causes excess bleeding after an injury or surgery. It also causes painful swelling of the joints with or without the injury. The frequency of hemophilia affecting the population is 1 in 10,000 male births while the women normally are the carriers of hemophilia. There are two types of hemophilia:
- Hemophilia A: The most common type of hemophilia which occurs due to the deficiency of clotting factor VIII (factor eight) in blood.
- Hemophilia B: It is less common in its occurrence affecting only 20% of people. It occurs when there is a deficiency of clotting factor IX (factor nine) in blood.
How Hemophilia is inherited from the parents?
The genes which carry the blood-clotting disease are found in the 'X' chromosome. While the boys have 'X' and 'Y' chromosomes inherited from their mothers and fathers respectively. The chromosomes found in girls are both 'X' chromosomes inherited from each of the parents.
In the male population, when the 'X' chromosome inherited from their mother is an altered clotting gene, it causes hemophilia. While in the female population, when either of the 'X' chromosomes inherited from either of the parents is an altered clotting gene, the female is called a "carrier." There are two types of carrier normally found in the female population:
- Obligate carriers: When the females inherit the altered clotting gene from their fathers, they are called obligate carriers.
- Potential carriers: When females inherit the altered clotting gene from their mothers who are already carriers are called potential carriers. The chances of inheriting from carrier mothers are only 50% and can be only determined by genetic testing.
What are the symptoms of hemophilia?
The main symptom of hemophilia is prolonged bleeding which varies on the severity of the illness. The bleeding generally consists:
- Sudden nosebleeds,
- Muscle bleeds,
- Bleeding of the gums, and
- Bleeding of the joints which occur inside the joints, for example, elbow joints.
The severity of the illness depends on the level of efficacy in the clotting factors present in the blood. As per the severity, hemophilia is categorised in three types:
- Mild hemophilia: Occurs in children who are born with it but do not show any symptoms. The illness becomes noticeable after any surgery, wound or any dental procedure which results in prolonged bleeding.
- Moderate hemophilia: Symptoms of mild hemophilia start with a mild feeling of irritation and pain in the affected joints. This most commonly occurs in the elbow, knees or in the ankles. Joints like wrist, hips and the shoulder can also be affected. If mild hemophilia in the joint is not treated properly it can result in stiffness of the joints, severe joint pain and the affected place can turn swollen and tender.
- Severe hemophilia: The symptoms become more severe and frequent. And the people suffering from it can start bleeding for no reason. If left untreated, it can lead to serious internal bleeding. When people suffering from severe hemophilia are left untreated or are unable to receive any treatment due to the lack of it, that can lead to bleeding of the soft tissue present in the body. Even deformity of the joints which may call for urgent surgery for replacement.
Note: There are small chances of people suffering from hemophilia developing bleeding inside their skull called intracranial haemorrhage. It is only caused by any type of head injury. The symptoms include:
- Vomiting,
- Severe headache,
- Confusion or change in the mental state,
- Trouble in vision,
- Lack of balance and in coordination, or
- Even partial or complete facial paralysis.
How hemophilia is diagnosed?
If there is any history of hemophilia in the family, the newborn baby gets tested for hemophilia soon after birth. If no other member of the family has the disorder then the doctor checks for hemophilia if the newborn shows any of its symptoms. There are a number of screening tests to detect the efficiency of the clotting of the blood. For example,
- Complete Blood Count test (CBC),
- Activated Partial Thromboplastin Time (APTT) test,
- Prothrombin Time (PT) Test,
- Fibrinogen Test, and the
- Clotting Factor Tests
According to a study published in a leading medical journal, it was found that yoga improved the quality of life of the children and adolescents suffering from hemophilia. The yoga classes included a few warm-up practices, several yoga asanas, a simple practice of controlled breathing (pranayama), and relaxation. As per the study, there was an overall improvement in the physical functionalities, psychosocial impairment and behaviour.
Yoga helps to improve the strength of the muscles surrounding the joints. As a result, the frequency in the number of bleeding episodes decreases. As people suffering from hemophilia are prone to stress, yoga and meditation help to make them more resilient to stress.
Celebrate World Hemophilia Day and help to increase its awareness everywhere. The awareness is needed so that the entire community all over the world, irrespective of country, gets access to proper healthcare and treatment.
Written By: Jaya Singh
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