by Thalassemia is a genetic blood disorder in which a defect lies in hemoglobin or blood production leading to anemia. If both parents are carriers of thalassemia, there is a 25 percent chance of having an older child with thalassemia who will require regular and frequent blood transfusions for life, usually starting at 6 months of age for the affected child, says a hematologist senior. World Thalassemia Day is celebrated every year on May 8 each year to raise awareness about the disease.
To raise awareness among parents of children with this condition, they should be aware of all the ways to prevent the spread of thalassemia to their child. Health Shots asked Dr. Anupam Sharma, consultant haematologist at Fortis Hospital, Noida, for some tips on caring for children with thalassemia.
How to care for children with thalassemia?
Thalassemia is a common disease in children, so here are some ways to prevent the disease and care for your child:
1. Understand the importance of regular blood transfusions
Parents of children with thalassemia major should be aware of the importance of regular blood transfusions to maintain the pre-transfusion hemoglobin target above 8-9 grams per deciliter (gm/dL). This limit is necessary for the normal growth and development of a child. However, frequent blood transfusions lead to accumulation of iron in the body that can be toxic to various vital organs. Therefore, regular monitoring and control of iron levels is recommended. Medications that remove excess iron from the body should be administered and monitored through regular OPD follow-ups under the supervision and care of a hematologist.
2. Avoid foods rich in iron
Thalassemia patients should avoid excessive intake of iron-rich foods or supplements unnecessarily. Bone marrow transplantation (BMT) is the only curative option that has high success rates of 85 percent and can cure the patient and family. In this way, lifelong suffering and health problems associated with regular blood transfusions are avoided.
3. Siblings of a thalassemia patient should be tested
If there is another sibling who is normal or a carrier of thalassemia, an HLA test compatible with the patient should be done. It is not a blood group matching test and even siblings with different blood groups have the possibility of having a complete HLA match with the patient.
All patients with thalassemia major should be offered BMT as the first line of treatment and HLA-typing matched with siblings, if available. Transplant outcomes are better for younger children as complications are fewer at a younger age.
In the event that a fully matched sibling donor is not available, options to use partially matched related donors or fully matched unrelated donors exist for stem cell donation and a BMT can be performed and should be considered taking into account the long-term implications and complications associated with periodic blood transfusions and iron toxicity.
Carry
It must be emphasized that every child with thalassemia deserves the opportunity to improve. Bone marrow transplantation should be offered as an option at an early age to all patients with thalassemia major. There are multiple thalassemia support societies and transplant funds available, such as Coal India, which provide financial support and funds for BMT to these children.
