World Thalassemia Day: Tips for parents to take care of kids suffering from thalassemia

Thalassemia is a genetic blood disorder in which a defect lies in haemoglobin or blood production that leads to anaemia. If both parents are thalassemia carriers, there is a 25 percent chance to have a thalassemia major child who will require regular and frequent blood transfusions for lifelong starting usually from 6 months of age the affected child, says a senior haematologist. World Thalassemia Day is observed every year on May 8 every year to raise awareness about the disease.

To raise awareness among parents of kids suffering from this condition should know all about the ways to prevent the spread of thalassemia in their child. Health Shots asked Dr Anupam Sharma is a consultant haematologist, Fortis Hospital, Noida about some tips to take care of children with thalassemia.

How to take care of children with thalassemia?

Thalassemia is a common disease in children, so here are some ways to prevent the disease and take care of your child:

1. Understand the importance of regular blood transfusion

The parents of thalassemia major children need to be aware of the importance of regular blood transfusions so as to keep the pre-transfusion Haemoglobin target above 8-9 grams per decilitre (gm/dl). This cut-off is required for normal growth and development of a child. However, frequent blood transfusions lead to iron accumulation in the body that can be toxic to various vital organs. So, regular follow ups and iron levels monitoring is recommended. Medicines that remove excess iron from the body should be administered and monitored through regular OPD follow-ups under the supervision and care of a haematologist.

2. Avoid iron-rich foods

Thalassemia patients should avoid excess intake of iron rich food or supplements unnecessarily. Bone marrow transplant (BMT) is the only curative option that has high success rates of 85 percent and can provide cure to patient and family. Thus, avoiding their lifelong sufferings and health issues related to regular blood transfusions.

3. Siblings of a thalassemic patient should be tested

If there is another sibling who is a normal or thalassemia carrier, he or she should be tested for HLA matching with the patient. It is not a blood group matching test and even siblings with different blood groups have a chance of having full HLA matching with the patient.

Every thalassemia major patient should be offered BMT as the first line of treatment and should be matched for HLA typing with siblings, if available. The outcomes of transplant are better for younger children as complications are less in younger age.

In case of non availability of full-matched sibling donor, there are options to use half matched related donor or fully matched unrelated donors for stem cell donation and BMT can be done and should be considered keeping in view the long term implications and complications associated with regular blood transfusions and iron toxicity.

Takeaway

It should be stressed upon that every thalassemia child deserves a chance to get better. Bone marrow transplant should be offered as an option in early age to every thalassemia major patient. There are multiple thalassemia supporting societies and transplant funding available like Coal India that provide financial support and funds for BMT to these children.