World Hemophilia Day is observed every year on 17th of April worldwide. It has been estimated that around the globe only 440,000 people suffer from hemophilia, thus very few people are aware about this disease. The day is acknowledged to raise awareness for hemophilia and numerous other bleeding disorders. World Hemophilia Day offers an opportunity to speak to friends, family, colleagues and the caretakers of the affected patients for raising awareness and increasing support for them.
World Hemophilia Day 2019 was celebrated worldwide on 17th of April, Wednesday.
World Hemophilia Day theme 2019 was “Outreach and Identification”. It was observed with the slogan – “Reaching Out: The First Step to Care”.
The theme mainly focused to reach to the communities and people facing bleeding disorders, identify them, connect with them and provide them an effective treatment. There were various seminars which were held around the theme across the world with the support of the WHF, World Hemophilia Foundation.
The day was observed with a campaign which lighted up the buildings, offices, monuments etc across the globe in red light to show the solidarity with the patients and to raise awareness in the communities regarding the disease.
In India, most of the famous monuments were lighted up in red on April 17th to observe the World Hemophilia Day. The Hemophilia Federation of India also conducted various seminars, discussions and awareness talks on the occasion to spread the awareness on the disease.
The celebration of the World Hemophilia Day commenced in 1989 and 17th of April was selected as the date to honor the birthday of the founder of World Federation of Hemophilia, Frank Schnabel. Hemophilia is a kind of genetic disorder that impairs the ability of human beings to control the blood clotting (which is utilized to discontinue bleeding when the blood vessels are ruptured).
Most popular form of this disorder is Hemophilia A, which is seen in 1 out of 5000-10000 births of males and Hemophilia B, which is present in 1 out of 20000-35000 births of males. Frank Schnabel founded the World Federation of Hemophilia in the year of 1963 with headquarters in Montreal, Canada. Presently, there are 113 countries that are members of this organization and its current president is Alain Weill.
The main aim of World Hemophilia Day is to raise awareness of the condition and bring understanding and attention of this issue to the wider public. The day is observed to be an awareness day for the disease and it also serves to attract volunteers and raise funds for the World Federation of Hemophilia. World Federation of Hemophilia is a non-profit entity which is dedicated towards improving the lives of people who are suffering from hemophilia and other alike genetic bleeding disorders. It educates the lobbies and hemophiliacs for enhanced medical treatment.
Since 1989, World Hemophilia Day is celebrated across different countries to raise understanding and awareness of hemophilia and other linked bleeding disorders. Many people are encouraged to get involved in awareness-raising campaigns and a wide array of activities that are organized for the day, to tell general public about the condition of hemophilia. Anybody can get involved in the activities, but generally employees of various health organizations participate in the event.
The employees of health organizations along with the patient groups worldwide conduct media events, awareness campaigns and other activities to educate people who are suffering from hemophilia as well as the general public about the bleeding disorders and to highlight the essence of proper care.
The problem with this type of illness is that many people receive improper treatment or sometimes no treatment at all. Almost 1 person out of every 10000 has bleeding disorder and requires necessary treatment. Creating awareness benefits such people and help them acknowledge the significance of its treatment. The campaigns undertaken on the day help in improving the present procedures of treatment for Hemophilia and make the world a healthier and a better place to live in.
Some of the examples of events held in recent years across the world are as follows:
India
World Hemophilia Day is celebrated to honor the birthday of the founder of the World Federation of Hemophilia, Frank Schnabel. In India, the event is celebrated in various states in the form of several activities undertaken by groups of people. Indian Hemophilia Foundation, New Delhi in association with the Ministry of Health and Family Welfare also initiates to celebrate the day, where health officials from different states and medical fraternities from all over India participate in the event.
The program is held to update all the decision makers at the national and the state level about the sufferings and disorder of the hemophiliac community. It is organized to focus on the lack of facilities and government support and the measures on how they can be upgraded and improved.
Apart from this, certain organizations and schools organize special events on the day with the red theme to spread knowledge about the day.
Canada
World Hemophilia Day is promoted by the World Federation of Hemophilia, Canadian Hemophilia Society and its provincial chapters in Canada. There is more than one person in 100 Canadians who carries an inborn bleeding disorder and more than 30,000 patients have symptoms that are very critical and require extreme medical care.
In Canada, World Hemophilia Day is celebrated in the form of various awareness activities. Events are held in schools by dynamic young boys with hemophilia to increase awareness about their problems. To highlight the day, an awareness table is also arranged in the hall of the building of Parliament. Volunteers and staff of various health organizations talk about the disease to common people, raise funds and distribute materials regarding the cause.
Australia
World Hemophilia Day is also celebrated in Australia to spread awareness about Hemophilia. More than 5,600 people of Australia are diagnosed with bleeding disorders which could be life threatening.
Hemophilia Foundation of Australia joins the global community for bleeding disorders to mark the day. In Sydney, Sydney Cricket Ground turns its lights red to support the World Hemophilia Day along with various other landmarks across the whole of Australia. In 2017, players of Sydney Swans- George Hewett and Sam Reid had worn red tie to showcase their support for people suffering from bleeding disorders. The tie signifies the blood that unites the community. Apart from the players, common people also showed their support in different ways to mark the importance of the day.
Europe
In Europe, the European Hemophilia Consortium organizes events to celebrate the World Hemophilia Day. The events are held to help the communities of hemophilia around the world to make their voice heard on current and pressing issues. The celebrations are in line with the theme of the prevailing year as announced by the World Federation of Hemophilia.
The hemophilia community joins hands with other organizations to demand from the government of Europe about the implementation of effective strategies for the eradication of the disease in Europe. The European Hemophilia Consortium also emphasizes on the situation of geographical lottery of the treatment of hemophilia patients which is not acceptable and that they need to do better for the patients. It also focuses on care to be provided for the elder hemophilic patients.
In Ukraine, it was estimated that around three thousand people in the state suffered from the bleeding disorder. Thus, World Hemophilia Day, 2017 was celebrated in the state by distributing high quality European medicines to the patients of Hemophilia.
India is a vast country with a huge population. There are around 50,000 estimated patients of hemophilia in India, which is a very little part of the population. Our country lacks a national policy on the control and prevention of genetic disorders, though the patients of hemophilia have received some attention. Hemophilia Day must be celebrated in India at huge levels to make its citizens aware of the bleeding disorder. Here are some suggestions to celebrate the day in India-
About Hemophilia
Hemophilia is basically an inborn bleeding disorder wherein a person is deficient in or suffers from low levels of specific proteins known as ‘clotting factors’. As a result, blood is not able to clot in a proper manner. This causes excessive bleeding. There are 13 kinds of clotting factors and they function with platelets for assisting the blood in clotting. People who have this disease bleed very easily and their blood takes longer period to clot. Hemophilia has three forms namely Hemophilia A, B and C. Out of these, Hemophilia A is the most common. The condition of Hemophilia cannot be cured but it can be treated to decrease symptoms and avert the future complications in health.
Symptoms of Hemophilia depend upon the severity of the patient’s factor deficiency. Patients with mild deficiency can bleed in situations of trauma. Patients with severe deficiencies can bleed without any reason which is known as ‘spontaneous bleeding’. Such bleeding may cause blood in the stool, blood in the urine, unexplained and large bruises, deep bruises, bleeding gums, joint pain, excess bleeding, tight joint, frequent bleeding in nose and irritability in children.
Hemophilia also displays symptoms that are extremely critical and constitute medical emergencies. If a person experiences any of the symptoms like constant bleeding in an injury, neck pain, extreme headache, double or blurred vision, repeated vomiting or extreme sleepiness, he must immediately get a treatment.
Hemophilia is an inborn disorder, means it is passed through families. It is caused by a deficiency in a gene which resolves on how the human body will make factors VII, IX or XI. The genes are found on the X chromosome, which makes hemophilia a disease of X-linked recessive. Hemophilia A can be treated with the help of a medical professional by a prescription hormone.
Such hormone is known as desmopressin which is given in the form of an injection in the patient’s vein. The medication functions by stimulating the factors which are accountable for blood clotting process. For the treatment of Hemophilia B, your doctor may infuse your blood with the clotting factors of a donor. For the treatment of Hemophilia C, your doctor might help you with plasma infusion which works to cease down profuse bleeding. Patient can also visit a physiotherapist for rehabilitation if his joints are damaged due to the disease.
World Federation of Hemophilia
World Federation of Hemophilia is a global non-profit corporation which is dedicated towards improving the lives of people suffering from Hemophilia and other inborn bleeding disorders. It educates lobbies and hemophiliacs on the improved medical treatment. World Federation of Hemophilia was founded in the year 1963 by Frank Schnabel with headquarters in Montreal, Canada. Presently, 113 countries are members of the organization and it is officially recognized from the World Health Organization. Recent president of the organization is Alain Weill.
Annual celebration of World Hemophilia Day has its own theme. Every year, the theme is different in the observance of the day. The World Hemophilia day on 17th of April, 2017 is kept with the theme of “Hear their voices”. This disease principally affects men and boys. But in 2017, the theme is to acknowledge girls and women who are living with a bleeding disorder. The primary aim of the campaign is to unify the community and generate support to millions of young girls and women attacked by bleeding disorders. The theme has been kept to acclaim the female heroes of hemophilia.
The campaign encourages women to take part in the conversation and share their stories on how hemophilia has affected their lives for others to learn about this condition. Following themes of previous years are given below:
Conclusion
Though minor cuts might be a small incident for common people, these might get really critical for the ones suffering from the disease. Hemophilia patients bleed for longer than usual; some may even experience spontaneous bleeding in their muscles, joints and other parts of the body. Patients of this disease require utmost care and treatment as the condition is very critical in some of the cases. Awareness about hemophilia is must as 75% people who suffer from this condition are not aware of it because the disease is mostly inherited. World Hemophilia Day is the best platform to raise awareness for the issue and generate funds for the betterment of the hemophilia community.