World Thalassemia Day: how to get diagnosed and treated to live a healthy life
World Thalassemia Day is on May 8. Every year, around 8,000-10,000 newborns in India are diagnosed thalassemia major, which is the most severe form of the disease.health Updated: May 08, 2017 20:22 IST
New Delhi: “When my mother found out I had thalassemia, she was appalled and scared,” says Nehal Dhingra a 27-year-old psychologist who was diagnosed when she was 18 months old and now counsels people with the inherited blood disorder who need regular blood transfusions to live.
Every year, around 8,000-10,000 newborns in India are born with thalassemia major, which is the most severe form of the disease. “There around 100,000 people with thalassemia in India, 2,200 of whom live in Delhi and the NCR,” said Dr V.K. Khanna, scientific advisor at Thalassemics India, and chairman of the Institute of Child Health at Sir Ganga Ram Hospital, New Delhi.
Prenatal testing of a sample of amniotic fluid (fluid surrounding the embryo) or tissue from the placenta can detect whether am unborn child has thalassemia and how severe it might be, but the test has few takers in India.
“Over the past two decades, there has not been a decline in people with thalassemia patients. Even though better medical technology has helped early diagnosis and prevention, the simultaneous increase in the population kept the numbers the same,” Deepak Chopra, president, Thalassemics India.
A child of a couple who are both thalassemia minors or carriers is likely to have the blood disorder. “Some estimates show 3.4% of the Indian population is either a thalassemia minor or a carrier and can pass the trait on to their offspring even if they themselves lead a normal, healthy life,” said Dr Khanna.
Thalassemia can be treated, cured and prevented. “Gynaecologists have a major role. When they advise pregnant women to get tested for infections such as Hepatitis B, they must also ask them to take the Complete Blood Count Test for thalassemia. A prick in time can prevent numerous pricks to the child in future,” said Shoba Tuli, secretary, Thalassemics India.
Treatment involves regular blood transfusion and chelation (removal) of excess iron from the blood. “While the child bears the pain, the parents bear the costs and make arrangements,” said Rajkumar Thakkar, father of Juhi Thakkar, 23, who has been on treatment since she was six months old.
A bone marrow transplant can cure the disease, but it is expensive and the chances of getting a 100% match are minimal.
The real battle is living with the disease. “I believe God gives problems only to those who he know have the strength to fight them,” said Mahak Malik, 21, who is an undergrad student at the vocational training institute in Delhi University. She loves to trek and auditioned for MTV Roadies.
“The sooner you accept the ailment, the easier it is to deal with it,” says Dhingra, who plans to do sky diving during her upcoming trip to Thailand.
What is thalassemia?
*Thalassemia is an inherited blood disorder in which the body makes an abnormal form of haemoglobin. The disorder results in excessive destruction of red blood cells, which leads to life-threatening anaemia.
*Thalassemia is inherited. At least one of the parents must be a carrier of the disease.
*If both of parents are carriers of thalassemia, the child has a greater chance of inheriting a more serious form of the disease.
*Not everyone has visible symptoms of thalassemia, but those who do may have excessive tiredness and fatigue, yellow or pale skin, dark urine, and delayed growth and development.,
*The treatment depends on the type and severity of disease involved. Treatment usually includes regular blood transfusions and prescription medicines and supplements. A bone marrow transplant can cure the disease.