· Parents feel that prenatal diagnosis is a necessity in protecting their baby
· Ignorance and prejudice in the community has led to social isolation for many families
· Doctors give holistic treatments plans for parents and child if diagnosed positive
On the occasion of World Thalassemia Day this year, doctors at Columbia Asia Hospitals, Ghaziabad, say, early diagnosis will be better for children and their parents, giving them time to make decisions about treatment.
Children with mild thalassemia do not show any symptoms, and doctors may not diagnose it until a routine blood test reveals anemia. Only on further investigation and testing for iron-deficiency, is when Thalassemia is detected generally.
Thalassemia refers to a spectrum of genetic blood disorders characterized by the reduction in the synthesis or absence of hemoglobin in the body. People with thalassemia usually produce lesser amounts of healthy hemoglobin, and their bone marrow could even stop producing healthy red blood cells after sometime.
Regular blood transfusions are an important form of treatment available to patients with thalassemia. Most thalassemia major patients require blood transfusions every 2-4 weeks, depending on their consumption of the infused cells. Regular transfusions provide patients with the red blood cells needed to survive. However, once these red blood cells are broken down, the body is left with an excess of iron.
Dr Sanjay Sharma, Pediatrics, Columbia Asia Hospital, Ghaziabad says, “Children who have mild thalassemia may feel tired or irritable, have shortness of breath, feel dizzy or lightheaded, and have pale skin, lips or nail beds compared to their normal color. In more severe cases, they may also have heart palpitations, jaundice, enlarged liver or spleen, enlarged bones, mainly in the cheeks and forehead, and slowed growth which is caused by the late onset of puberty caused by anemia. 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.”
Thalassemia is an inherited condition which is carried in the genes and passed on from parents to children. One of the major types of thalassemia, Beta thalassemia happens when the gene that controls the production of beta globin is defective. Beta thalassemia can cause anemia ranging from mild to severe and is more common in people of Mediterranean, African, and Southeast Asian descent. Clinical studies in the past have shown that the care for thalassemic children has not been given due significance and is posing a threat in the public health of our country. The situation has been characterized by the lack of awareness of the problem, failure in planning, no provisions for prevention, and inadequate treatment leading to premature death among the affected children.
“Children suffering from this disease require psychosocial support, including promotion of a clear understanding of the disease. Thalassemia support groups are also very important as they not only educate patients and their families about the disease, but also provide them with an opportunity to meet their peers and participate in social activities. Children should be allowed to get involved in normal activities with healthy peers to further their development and build their self-image. The need for psychosocial support is greater in India where treatment poses a financial burden as well. The need to shift the attention on psychosocial management aspects of Thalassemic by initiating intervention programs will help them in leading a healthy, creative and fulfilling life,” adds Dr Sanjay Sharma.
Doctors at Columbia Asia Hospitals, Ghaziabad say that this disease poses a major physical and emotional health burden for many children and their family members, and just like other blood-disorders, there is still a certain level of stigma attached to it. Collective action can pave the way for a brighter future with regard to treatment and management in thalassemic children. And, parents must remember that if they are diagnosed with the disease, it is not the end of the world, and there is hope left for them and their children.