Thalassemia Need to create awareness

Among the various diseases that affect children, thalassemia is the most dangerous, posing serious risk to their survival. It is caused through genes in a child inherited from its parents. Surprisingly, there is no cure for this blood disorder affecting children but it can be prevented.

According to Dr M R Loke-shwar, a renowned physician, “the majority of children born with thalassemia in India die  undiagnosed or due to lack of proper treatment.

As the therapy of thal-assaemia is expensive and beyond the reach of many
patients, a government sponsored national programme is needed for prevention, screening of high risk population, counselling and prenatal testing”.
 
It causes devastating impact on the health of the patients and finances of their families as the patients require life-long blood transfusions. In other words, the thalassemic child leads a borrowed life depending on blood transfusions and chelation therapy for iron overload.

The beauty of blood donation lies in the fact that the recipient does not know the donor generally. An unseen, real hero saves a life. It is the greatest service to the suffering  people.

To quote Kahlil Gibran, “You give but little when you give your possessions. It is when you give of yourself that you truly give”.

Due to the negligence  of  parents, the “bundle of joy” becomes a “burden” on them.  They have to take their baby to hospital regularly for blood transfusions and this causes mental trauma as they see their child pricked with needles frequently.

They feel that in spite of giving expensive treatment, they are helpless to bail out the child. Thalassemia not only affects children, it also creates psychological and social problems in the family.

The disease is spreading because of ignorance of people. Therefore, creating awareness is the need of the hour. Although every year on May 8, World Thalassemia Day is celebrated all across the world, the common man is not aware of this disease.

Thalassemia is known to be more dangerous than polio. Not only thalassemic children and their parents or NGO workers but people from all walks of life should join hands to make the world thalassemia-free.

When in cities, people are not familiar with the disease, one can imagine the fate of unfortunate children of the rural areas. According to the National Health Mission, there are about 700 million people living in 6 lakh villages in India. Most states lack in medical facilities in rural areas to treat the diseases.

Although many projects, including the Child –Health Programme was launched in the Fifth Plan Period, the situation in rural areas has not improved.

Unlike cities, most of the primary health centres in rural areas neither have child specialists nor can provide basic medical facilities for children.

Karnataka tops

According to Dr Sujata M Jali of the KLE’s Prabhakar Kore Hospital & Medical Research Centre, Belagavi, Karnataka has more number of thalassemic children than other states.
The main reason is lack of awareness. She said, “electronic and print media can play a constructive role to prevent this disease”.

Here are a few suggestions to create awareness in society: At the time of marriage, the blood test of both the bride and the groom should be conducted. It is a sure way of eradicating thalassemia.

Gynaecologists can be very useful and effective in creating awareness in people and prevent thalassemia. They can include the test for thalassemia trait in routine check-up of pregnant women.

School text books should have a chapter on thalassemia. Blood donation camps can be held at schools and colleges.

An NGO in Pakistan, TAAP (Thalassemia Awareness & Prevention in Pakistan) is
popularising a thalassemia theme song “Aaas ka diya jalana hai”. Besides songs,
we can have feature films, dramas, stories, debates, and seminars educating the
masses.

Posters and hoardings of thalassemic children with a strong message can be displayed at airports, railway stations, shopping complexes, and places of worship. Pub-
licity campaign can be carried out during local fairs and festivals as part of awareness creation.