Thalassemia Day

World Thalassemia Day is celebrated every year on the 8th of May to increase awareness about this disease among the common public all through the world. Celebrating World Thalassemia Day on the 8th of May was established by the World Health Organization in order to raise public awareness about this disease, prevention measures and measures to avoid its transmission.

According to the statistics, around 19% of the total population is the carrier of the Thalassemia gene in the Saudi Arabia Kingdom. Thus world thalassemia day is celebrated there as a big event by organizing a variety of preventive programs to increase awareness and reduce the spread of this genetic disease. This event celebration promotes and encourages the common public for the pre-marriage test to reduce the genetic problems among families.

8th of May has become a very special day for the people suffering from thalassemia as it brings a chance for them to get diagnosed earlier. The day is dedicated to commemorate the thalassemia patients and give them a special chance to live like a normal person as well as prevent this disease to spread in the community, society, state, country, and finally the world.

World Thalassemia Day 2019

World Thalassemia Day 2019 was observed by people all over the world on the 8th of May, Wednesday.

World Thalassemia Day theme 2019 was “Universal access to quality thalassemia healthcare services: Building bridges with and for the patient”.

Thalassaemia International Federation (TIF) organized 3 online competitions across the globe with regard to a certain theme. The competition included a video challenge, a photo contest, and a story competition. This event was aimed to showcase the solidarity with the patient suffering from the disease.

In Hyderabad, a bike rally was organized on the eve of World Thalassemia Day on 06th May. Around 100 bikers from the Royal Enfield Bullet Club took part in the rally. The aim was to spread awareness of this genetic disease.

Hospitals across the world held various seminars, discussions, and talks on the day to devise new techniques and medication to fight thalassemia. Awareness campaigns and free screening camps were also organized on the day to spread awareness of the disease.

What is Thalassemia

Thalassemia is an autosomal recessive blood disorder that gets inherited from parents to the children through genes. It is a blood disorder causes weakening and destruction of the red blood cells, affects the formation of hemoglobin in the body and causes mild or severe anemia. It causes complications like bone deformities, iron overload, cardiovascular illnesses, heart palpitations, enlarged liver, jaundice, enlarged spleen, enlarged bones of cheeks or forehead, delayed puberty and etc.

Around 3.4% of the people are a carrier of thalassemia and around 7000 to 10,000 children are born with thalassemia per year in India. It can be of any type such as alpha thalassemia, beta-thalassemia, delta thalassemia and combination of other hemoglobinopathies (hemoglobin C, D, E, and S).

 

It is seen among children of one or two years of life. Mild thalassemia sometimes does not show any symptoms thus can be undiagnosed until blood tests (complete blood count, CBC test). It can be treated through blood transfusion, B group vitamin supplements, iron chelation therapy and blood and bone marrow stem cell transplantation to maintain the normal level of hemoglobin and healthy RBCs.

Since it is an inheritable disease so cannot be prevented completely however, it can be lessened through the prenatal tests which help in the early detection and cure before the childbirth. It is requested to all the carriers of the thalassemia gene to meet a genetic counselor as soon as possible to get proper treatment before being a parent of a child or prevent the gene to get inherited to their child.

Why World Thalassemia Day is Celebrated

World Thalassemia Day is celebrated all across the world to help people suffering from thalassemia and its complications in their daily life. Thalassemia is a genetically inherited blood disorder that can affect people of any age group. It is a disease that had the ability to destroy the whole nation and the world by affecting a child. Children are the most important asset of the country and world who have the capability to lead their nation and world thus it has become the big responsibility of the government of each country to prevent children, country and the world from this fatal inheritable disease. Some of the objectives of world thalassemia day are mentioned below:

> It is celebrated to increase awareness about the disease among the common public.

> To develop the most effective prevention measure to have control on the disease.

> To motivate and encourage the common public especially youths for blood donation in order to prevent the people suffering from thalassemia.

> To motivate doctors and other health professionals to take care of the patients especially what they need.

> To promote the people suffering from it to come to the hospital for early detection, prevention, and cure.

> To motivate the youths for the pre-marriage test to get diagnosed about this problem and prevent this disease to get inherited among new generations.

> To make the community, society, nation and world free of thalassemia and other inheritable diseases.

> To give them (people having thalassemia) an equal chance of living like a normal and wellbeing person.

> To encourage government organizations to develop more health care facilities in the vulnerable area.

> To reduce the death rate of people all over the world on an international level because of the thalassemia.

> To increase the number of healthy people without thalassemia or other fatal diseases in the country and world.

 

How World Thalassemia Day is Celebrated

World thalassemia day is celebrated by organizing various activities and events in public places, schools, colleges, and other educational institutions to make it more effective. Patients and their families are encouraged to actively take part in the celebration to get all the knowledge about the thalassemia.

The Thalassemia International Federation (TIF), which is a non-profit and non-governmental patient-driven organization, actively involves organizing the event celebration with its associated associations and members in many countries. World Health Organization and other health bodies all through the focuses on the patient’s basic rights to encourage more people with thalassemia.

Variety of activities like debates on the health-related subjects, discussion over the thalassemia patient’s quality of life including health care services. Posters and banners’ activities are also done to aware people of this disease.

Varieties of other awareness campaigns are launched by the TIF aiming to spread the information and awareness about hemoglobinopathies, hemoglobin disorders, and iron deficiency among common people, especially amongst young people. Educational materials are also distributed to young students to raise awareness among youths.

Red Day Activities are also organized by the TIF at many places when students wear red T-shirts indicating the cartoon characters of red-blood cells showing the requirement of thalassemic patients.

World Thalassemia Federation

Thalassemia International Federation is a non-profit and nongovernmental organization having 108 member associations all over the world in 55 countries and officially has relation to the WHO and other major health-related agencies since 1996. TIF is responsible for improving the quality of life, health and the life expectancy of the thalassemic patients and patients with other inherited congenital hemoglobin disorders. It involves many activities such as:

> It provides supports to other health organizations in increasing health awareness all through the world.

> It helps in establishing some new health organizations for better health care of the patients.

> It supports and encourages other national health authorities in developing effective and efficient national health control strategies, prevention measures and clinical management of the disease.

> It organizes educational campaigns for the patients and their families, parents, health specialists, and other medical professionals to raise awareness.

> It organizes local, regional, national and international level conferences, seminars, workshops and campaigns of distributing educational materials and books in order to provide up-to-date information to people, web visitors, and its members.

> It also helps in promoting the national health control programs in the European countries.

> Collect and promote updated and accurate epidemiological data for diseases.

> Create European Reference Centres and collaborative networks between the medical professionals and patients communities.

World Thalassemia Day Theme

This special day is celebrated every year using a particular theme to make it very effective and encourage patients to get appropriate treatment to enhance their quality of life. Some of the year wise themes are listed below:

> Theme for 2019 is – “Universal access to quality Thalassaemia healthcare services: Building bridges with and for the patient”.

> The theme for 2018 was: “Thalassaemia past, present, and future: Documenting progress and patients’ needs worldwide”.

> The theme for 2017 was “Get connected! Share knowledge and experience and fight for a better tomorrow in thalassemia”.

> The theme for 2016 was “Access to Safe & Effective Drugs in Thalassaemia”.

> The theme for 2015 was “Enhancing partnership towards patient-centered health systems: good health adds life to years!”

> The theme for 2014 was “Economic Recession: Observe – Joint Forces – Safeguard Health”.

> The theme for 2013 was “The right for quality health care of every patient with Thalassemia: major and beyond”.

> The theme for 2012 was “Patient Rights Revisited”.

> The theme for 2011 was “Equal Chance to Life”.

> The theme for 2010 was “Thalassemia: Knowledge is Strength”.

> The theme for 2009 was “Together with industry. We Care”.