Understanding and Supporting: World Thalassemia Day

On May 8, we celebrate International Thalassemia Day to honour those who suffer from this illness and to raise awareness of it and its prevention. World Thalassemia Day, observed annually on May 8th, is a poignant reminder of the challenges faced by individuals and families affected by this genetic blood disorder. This day serves as a platform to raise awareness, educate communities, and advocate for better care and support for those living with thalassemia. In this blog post, we delve into the significance of World Thalassemia Day, the impact of thalassemia on individuals and society, and how we can all contribute to supporting those affected.

Just what is thalassemia?

The genetic disorder known as thalassemia results from a mutation that causes an aberrant haemoglobin structure, which the body eliminates, and the haemoglobin levels drop. A single gene mutation is known as thalassemia minor. Patients with minor thalassemia only have mild anaemia; they have no significant issues going about their daily lives. Despite this, they have thalassemia. Should both parents have thalassemia minor, the child may inherit their mutations from either parent, and there is a 25% risk that the child would be born with thalassemia major, a terrible and deadly disease. Such people have extremely low haemoglobin and need frequent blood transfusions to survive.

Indian thalassemia 

Between three and four percent of Indians, or between 3.5 and 4.5 crore people, have thalassemia minor. According to 2011 statistics, there are 1,00,000 people in India with thalassemia major, and between 10,000 and 11,000 new-borns are born with the disorder annually. Because it is home to so many thalassemia sufferers, India is sometimes referred to as the “Thalassemia Capital of the World.”

Minor thalassemia is far more common in some communities—Sindhi, Punjabi, Kutchi, Lohan, Bhatia, Mahar, Gowda, Lingayat, etc.—up to 10% or more. The likelihood of two Thalassemia minors marrying each other is far higher in such groups, and as most weddings in India occur within the community, these communities also have a far higher number of Thalassemia major patients.

Care of patients with serious thalassemia

Every two to four weeks, patients with significant thalassemia will need a blood transfusion. In addition, they require care for the illness and its side effects, which include hormonal disorders, iron overload, and occasionally infections including HIV, hepatitis B, and C. Repeated blood transfusions cause the body to store iron, which deposits itself in organs including the heart, liver, hormone glands, and so forth. To eliminate iron from the body, individuals must take medications for the rest of their lives.

The patient will, all things considered, make several hospital trips and miss a lot of days from work and school. As one ages, the quality of life declines because problems mount up. Generally speaking, life spans increase with improved care. Still, Thalassemia major patients have a grim prognosis despite the best efforts of the family and the specialists.

Treatment of major thalassemia 

Changing their hematopoietic stem cells—the bone marrow cells that produce blood cells—can enable patients to produce normal haemoglobin. This course of therapy is referred to as bone marrow transplantation. Only with this intricate therapy is thalassemia major curable. Any healthy individual whose HLA type, or immune system fingerprint, matches the patient can be a bone marrow donor. A match is most likely with a brother or sister. There are stem cell registries where one can locate unrelated matched donors if there isn’t a match in the family.

Prevention of Thalassemia

Most often, mild thalassemia goes unnoticed. The majority of them won’t know they carry the thalassemia gene. If they don’t have sophisticated testing, such as Hb electrophoresis, their CBC will closely resemble the image of iron deficiency. As is often the case, an asymptomatic Thalassemia minor marries another Thalassemia minor, and the two of them may have a Thalassemia major child.

This has got to stop. Finding thalassemia in minors will require extensive community initiatives, particularly in high-risk areas. All low-haemoglobin women in the childbearing age group. If a woman receives a diagnosis of thalassemia minor or any other hemoglobinopathy, she should test her spouse to determine if he also has the condition. The thalassemia test is widely available and not very expensive. The test result can inform such carriers about the risks of marrying another carrier. Before giving birth, all thalassemia-infected minor couples should have their child tested to determine their child’s thalassemia status and to determine whether or not to carry the pregnancy to term.

Let us thus promise to disseminate information about thalassemia, support patients during their treatment, and—above all—take all necessary steps to prevent serious thalassemia. Recognize, distribute, and take care!

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