Over 1 Lakh Thalassaemia Patients Die before They Turn 20

Gurgaon, 09th May 2018: India is one of the worst thalassemia infected countries in the world with more than 4 crore carriers and over 1 lakh thalassaemia majors under blood transfusion every month. With the World Thalassaemia Day around the corner, the focus falls back on the efforts to contain the disease.

Over 1 lakhthalassemia patients across the country die before they turn 20 due to lack ofaccess to treatment. With preventive health not being the norm in India, peoplesuffering from thalassaemia are unknowingly passing on this genetic disorder totheir children. Every year more than 10,000 children with thalassaemia majorare born in India.

Whilecountries like Pakistan, Dubai, Abu Dhabi and Saudi Arabia have made carriertesting compulsory for relatives of thalassaemia patients long back, there hasbeen no move to put in place prevention and control program at the nationallevel in India.

“Thalassemiais an inherited condition which is carried in the genes and passed on fromparents to children. One of the major types of thalassemia, Beta thalassemia,happens when the gene that controls the production of a protein called betaglobin becomes defective. The rising number of thalassemic children is posing athreat on the public health of our country. Lack of awareness of the problem,failure in planning, no provisions for prevention and inadequate treatmentleading to premature death among the affected children are the leading causesfor the crisis”, says Dr. Manjeetha Nath Das, Consultant InternalMedicine, Columbia Asia Hospital, Gurgaon.

The inheritedblood disorder destroys the red blood cells extensively, leading to anaemia, inwhich the body does not produce enough normal healthy blood cells. Thalassemiacould be one of the important factors causing high anaemia rates inGurgaon.  As per government data, around 63% of children between theage of 6 to 59 months are anaemic in urban Gurgaon.

Childrenwith mild thalassemia do not show any symptoms, and doctors may not diagnose ituntil a routine blood test reveals anaemia. Only on further investigation andtesting for iron-deficiency, is when Thalassemia is detected generally. Thefocus needs to be on early diagnosis, which gives the patient and family duetime to contain the disease.

“Childrenwho have mild thalassemia may feel tired or irritable, have shortness ofbreath, feel dizzy or lightheaded, and have pale skin, lips or nail bedscompared to their normal colour. In more severe cases, they may also have heartpalpitations, jaundice, enlarged liver or spleen, enlarged bones, mainly in thecheeks and forehead, and slowed growth which is caused by the late onset ofpuberty caused by anaemia. If children are not diagnosed and treated in time,thalassemia may play a part in other health problems such as heart diseases,infections and weakness, and brittle bones”, he says. 

Thalassemiarefers to a spectrum of genetic blood disorders characterized by the reductionin the synthesis or absence of hemoglobin in the body. People withthalassemia usually produce lesser amounts of healthy hemoglobin, and their bonemarrow could even stop producing healthy red blood cells after sometime. Thedisease has wide-ranging effects on the human body like iron overload, bonedeformities and in severe cases can cause heart diseases. Currently there is nocure for thalassaemia and regular blood transfusion is the only measure toprolong life.

Mostthalassemia major patients require blood transfusions every 2-4 weeks,depending on their consumption of the infused cells. Regular transfusionsprovide patients with the red blood cells needed to survive. However, oncethese red blood cells are broken down, the body is left with an excess of iron.

Suggestingsome strategies for control, Dr. Manjeetha Nath Das says, “Thereis a need to educate health professionals, school and college students,pregnant women and the population at large about thalassemia. Establishingprenatal diagnosis facilities in different regions of the country and settingup a greater number of day care centers for managing existing thalassemiapatients along with developing cost-effective facilities for stem celltransplantation across the country are certain infrastructure developmentstrategies which can help in curbing the burden.”

Thalassemiaposes a major physical and emotional health burden for many children and theirfamily members, and just like other blood-disorders, there is still a certainlevel of stigma attached to it. Collective action can pave the way for abrighter future with regard to treatment and management in thalassemicchildren. And, parents must remember that if they are diagnosed with thedisease, it is not the end of the world, and there is hope left for them andtheir children.

Childrensuffering from this disease also require psychosocial support, includingpromotion of a clear understanding of the disease. Thalassemia support groupsare also very important as they not only educate patients and their familiesabout the disease, but also provide them with an opportunity to meet theirpeers and participate in social activities. Children should be allowed to getinvolved in normal activities with healthy peers to further their developmentand build their self-image.

The need forpsychosocial support is even greater in India where treatment poses a financialburden as well. The need to shift the attention on psychosocial managementaspects of thalassemics by initiating intervention programs will help them inleading a healthy, creative and fulfilling life.

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