Her life revolves around blood transfusions to ensure her hemoglobin levels are normal. But she fights against all odds to stay energetic. That’s Namitha A Kumar, a 44-year-old researcher and medical writer from Bengaluru who was diagnosed with thalassemia, a blood disorder, when she was four. Namitha excelled in academics and has a good career, despite living with thalassemia.
Namitha, a voice of people living with thalassemia, started falling sick frequently in the 1980s when she was young. A series of infections led the doctor to suspect thalassemia as low hemoglobin leads to compromised immunity. She was sent to Mumbai for further tests and was diagnosed with thalassemia intermedia, a moderate type of thalassemia.
Living with thalassemia means frequent blood transfusions
Thalassemia is an inherited blood disorder caused when the body doesn’t make enough of a protein called hemoglobin. It is an autosomal recessive disorder (both parents are carriers but are not affected themselves). Namitha had no family history of thalassemia.
Blood transfusions are the basic treatment for thalassemia to increase the hemoglobin levels. They were unaware of this method in the 1980s, recalls Namitha.
When Namitha was five, she was taken to Switzerland where she underwent splenectomy which is the surgical removal of the spleen to lengthen the lifespan of red blood cells. This reduced the frequency of blood transfusions.
Namitha recalls that she was an energetic kid and wanted to do many activities, though doctors warned her against physical strain. “My school days were full of sports, playing around and joining sports teams,” recalls Namitha.
However, she was careful about infections and avoided food from unhygienic places. “Barring that, I managed like any other child and used to go to restaurants, picnics, holidays,” Namitha said.
Namitha pursued her studies and earned her PhD from National Institute of Advanced Studies (NIAS), Bengaluru in 2015 on cognitive (conscious) adaptations in people with physical and sensory disabilities.
Namitha is the honorary research director at the not-for-profit Centre for Health Education and Technology which also supports other rare diseases.
Namitha heads the communication and outreach program at Open Platform for Orphan Diseases, a not-for-profit organisation, in Bengaluru. “We work on bettering the life of people with blood and bleeding disorders with awareness, advocacy and health counselling,” said Namitha who also is a consultant with Mumbai-based education consultancy – The Red Pen.
Dr Satish Kumar Anumula, Hemotologist, Manipal Hospitals, Yeshwantpur, Bengaluru who treats Namitha says that she is a great source of motivation and inspiration for everyone.
Dr Anumula adds that thalassemia can be a challenging condition to live with (regular transfusions, endocrine disturbances and regular hospital visits) but she copes up with both physical and emotional demands with tremendous resilience. “She also actively supports others living with thalassemia and helps them overcome challenges,” Dr Anumula told Happiest Health.
Guidelines to follow when living with thalassemia
Namitha strictly adheres to simple guide to thalassemia care that she carefully follows:
- Ensuring monthly, timely blood transfusions without delay.
- Being aware of all the disruptions such as infections, endocrine issues, liver complications, bone issues. Annually consulting a gastroenterologist, cardiologist, routine eye and ear examination.
- Regular blood tests, ultrasound scans, ECG, and ECHO.
- Conserving energy for the most important activities. Do what is necessary and avoid straining your body or go beyond what your body can actually deliver.
- Consulting the primary physician and the hematologist regularly to detect any problem immediately.
- Keeping adequate stock of medicines or utilities at home.
Dr Anumula adds that if thalassemia is diagnosed early, the only curative option is bone marrow transplant or allogeneic stem cell transplant, where healthy blood forming stem cells are received from a matching donor. “Even if they do not have siblings that match, parents can donate stem cells which is called haploidentical stem cell transplant,” he said.
Managing thalassemia
Agreeing with Namitha, Dr Kumar mentions additional aspects that help manage thalassemia.
- Iron chelation therapy: Regular blood transfusions can lead to an excess of iron in the body, which can be harmful – especially to liver, heart and endocrine organs. In iron chelation therapy excess iron is removed from the body using medication. This is the biggest challenge for thalassemics.
- Healthy diet and exercises: Those living with thalassemia must consume a balanced diet, but avoid a diet rich in iron. They should avoid iron supplements. Folic acid and other vitamin/ mineral supplements may be needed. Staying active with regular exercise is a must.
Preventing thalassemia
Dr Anumula stresses the need for thalassemia prevention. “All expecting mothers and their spouses should get a simple test called HB electrophoresis or HPLC to know if they have a thalassemia minor or any other hereditary hemoglobin problem called hemoglobinopathy. If both partners have a thalassemia minor, they should undergo genetic testing and counselling to prevent the birth of a child with thalassemia,” he said.
Namitha adds that countries like UAE, Saudi Arabia have achieved a metric of lowering the birth rate of babies with thalassemia by premarital counselling, which can be replicated in India.
Takeaways
- Thalassemia is a blood disorder where the body does not produce the required amount of hemoglobin in the red blood cells.
- Those detected with thalassemia or other severe forms require frequent blood transfusions.
- Living with thalassemia means being on a strict diet and ensuring regular medical check-ups.
