World Thalassemia Day 2018: A doctor’s advice to parents of Thalassemiac kids

Thalassemia is a hereditary disorder acquired from a person's parents.

By: Aishwarya Iyer | | Updated: May 7, 2018 5:38 pm

Being a parent is a tough ask. However, it can be rather stressful to see your kid suffer in front of your eyes. Thalassemia is one such disease which can be quite agonizing to watch for someone. Dr Niranjan Rathod, Associate Director and HOD, Haemato- Oncology in Bone Marrow Transplant, Nanavati Super Speciality Hospital says it is more important to counsel a parent whose child is undergoing treatment for thalassemia and if not that, it’s even more important to be counsel a couple before starting a family to be tested for thalassemia.

Thalassemia is a hereditary disorder acquired from a person’s parents. There are two primary constitutes, alpha thalassemia and beta thalassemia. The seriousness of alpha and beta thalassemia relies upon what number of the four alpha globin or two beta globin are absent or defective.

‘Several surveys and studies show that Indians have the largest thalassemia burden in the world and nearly 4 % people in India are carriers of ß (beta) thalassemia trait. About 10,000 – 15,000 babies with thalassemia major are born every year. Hematopoietic Stem Cell Transplantation (HSCT) is the only cure for an affected child which is not a feasible option for all.’

Ask him, then what is the way out? ‘So prevention is the best modality to reduce the disease burden.’

Counselling not only helps people understand the depth of the disease but also helps them deal with it more positively. As a community, we all need to emphasize on generating awareness about the disease and the preventive measures to be taken.

‘Birth of a thalassemia major child can be prevented by knowing the thalassemia carrier status of the parents prior to planning a child. Thalassemia carrier state is also known as Thalassemia Minor or Thalassemia Trait.’ Know the 5 most common symptoms of thalassemia.

If both parents test positive for the carrier state, they need to be counselled for prenatal diagnosis in the first trimester of pregnancy to know whether the index foetus is affected or not. If affected, medical termination of pregnancy is advised to the couple. They may also consider the option of In-Vitro Fertilization (IVF) with Pre implantation genetic testing done to ensure an unaffected child.

Read: For finding a perfect match, getting screened for thalassemia is equally important.

‘If the couple is planning to have a child and at least one of them has tested negative for thalassemia carrier state, then one can be very sure that their child will at least not be a thalassemia major, but can be a thalassemia trait and will able to sustain a normal life.’

Image Source: Shutterstock

Published : May 7, 2018 5:23 pm | Updated:May 7, 2018 5:38 pm

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