It is hard to deny that parenting is a tough journey and always demanding, yet satisfying. There's love, responsibility, and a lasting commitment to a child's well-being. However, when a child is diagnosed with a genetic disorder like thalassemia, that journey becomes even more complicated and emotionally challenging.

Thalassemia, which is not much talked about, is not just a medical condition but a lifelong challenge that affects every aspect of a child' development, health, and quality of life. This makes it crucial for parents to be fully informed and aware of the nature of the disorder, the risk it carries, the available treatment options, and the evolving medical advancements that offer hope for a better and healthy future.

What is Thalassemia?

To explain further, thalassemia is hereditary blood disorder that affecrs the body's ability to produce normal hemoglobin, the protein in red blood cells responsible for carrying oxygen throughout the body. Primarily, children with thalassemia experience chronic anemia, which can lead to several issues like:

According to Dr Mrinalini Chaturvedi, Medical Director of Cryoviva Lifesciences explains that thalassemia is an inherited red blood cell disorder that impairs hemoglobin production and, if left undiagnosed, can lead to serious complications in children. "It is important for all parents to be aware that both partners can unknowingly be silent carriers of the condition. Fortunately, advances in medical science have significantly improved outcomes," says Dr Chaturvedi.

Bollywood actors like Amitabh Bachchan and Jacki Shroff have opened up about their battle with thalassemia.

Diagnosis of Thalassemia:

In India at least three to four per cent of individuals are a carrier of thalassemia gene and about 1.5 lakh patients are suffering from thalassemia major. To reduce the burden of thalassemia, Dr Chaturvedi insists parental decision-making. "It is the responsibility of healthcare professionals, policymakers, and educators to ensure that screening is integrated as a routine component of antenatal care."

One of the most daunting aspects of thalassemia is that it often comes as a surprise diagnosis. Many parents discover they are carriers of the gene only after their child is diagnosed, leading to confusion, guilt, and a frantic search for information. "Understanding the genetic inheritance patterns, available diagnostic tools, and preventive measures—such as carrier screening and prenatal testing—is essential for making informed decisions, especially in families where thalassemia is already present," suggests Dr Chaturvedi.

Types of Thalassemia:

"Public awareness and early diagnosis are key to managing thalassemia effectively. Parents are encouraged to seek genetic counselling and ensure timely medical intervention, offering affected children a better quality of life and access to improved outcomes," concludes the professor.

According to Professor Dr Parin Somani, there are two main types of this condition – thalassemia major and thalassemia minor. He says children with thalassemia major typically show symptoms within the first two years of life, including fatigue, paleness, poor growth, and an enlarged spleen. "These children require regular blood transfusions to manage symptoms and support normal development," says Dr Somani.

In the last few years, treatment for thalassemia has significantly evolved. In addition to lifelong transfusions, Dr Somani informs that iron chelation therapy is vital to prevent organ damage caused by excess iron. Bone marrow or stem cell transplants may offer a potential cure, especially when a matched sibling donor is available. Gene therapy is emerging as a promising frontier but remains in developmental stages.

Read More :

How Tulu Rock Band Alva Kuuto Is Turning a 2,500-Year-Old Language into the Sound of Now