Essential Dos And Don’ts For Caregivers To Manage Thalassaemia At Home
World Thalassaemia Day: Caregivers play a vital role in managing thalassaemia by ensuring timely transfusions, chelation, and regular health monitoring.
Every year, May 8 marks World Thalassaemia Day, and in 2025, the theme — “Empowering Lives, Embracing Progress: Access to Quality Care for Every Patient” — shines a spotlight on the support that Thalassaemia patients and their families need beyond hospital walls. With India accounting for one of the world’s highest burdens of Thalassaemia, expert guidance becomes crucial for families walking this difficult path.
Dr. Pravas Chandra Mishra, Program Head – Myeloid Cancers, Bone Marrow Failures and Hemoglobinopathies at Amrita Hospital, Faridabad, shares practical “Dos and Don’ts” that every family member and caregiver of a thalassaemia patient should be aware of — to ensure quality care, better outcomes, and a stronger support system at home.
Understanding Thalassaemia: A Quick Primer
Thalassaemia is a group of inherited blood disorders that affect the body’s ability to produce haemoglobin — the protein in red blood cells that carries oxygen. Children born with thalassaemia major, the more severe form, require lifelong blood transfusions and medical support. Without proper care, complications like iron overload, bone deformities, stunted growth, and organ damage can arise.
According to the National Health Portal of India, over 10,000 thalassaemia major babies are born each year in India. Despite advances in medicine, many families struggle with access, awareness, and affordability.
Dos For Families And Caregivers
1. Stick to regular transfusions and chelation: Patients with thalassaemia major need regular blood transfusions. These increase iron in the body, which must be removed through chelation therapy. “Skipping chelation can lead to serious organ damage,” cautions Dr Mishra. Maintain a healthcare journal to track transfusion dates, medication, and lab results.
2. Focus on a balanced, iron-restricted diet: While thalassaemia doesn’t directly relate to food, patients are advised to avoid iron-rich diets unless medically prescribed. Instead, include calcium, folate, and vitamin D, which help strengthen bones and immunity.
3. Encourage physical activity and accessibility: "Even basic movement can improve bone health and mood,” says Dr Mishra. Make home and school environments accessible — such as wheelchair ramps or supportive seating — to improve participation and dignity.
4. Tap into support schemes and networks: Various government initiatives and patient groups like Thalassaemia Welfare Societies can provide guidance, financial aid, and even help with donor registries like the National Marrow Donor Program (NMDP) or DKMS-BMST. Don’t hesitate to advocate for your child.
5. Keep up with regular testing: Essential blood and organ function tests (such as ferritin levels, CBC, liver/kidney function, and endocrine panels) should be done every 3-6 months. Early detection of complications allows timely intervention.
6. Prioritise mental health: Living with a chronic illness can be emotionally taxing. Families with strong emotional bonds and mental health support report better coping mechanisms. Open communication is key.
Don’ts That Can Put Lives At Risk
1. Don’t give iron supplements unless advised: Excess iron is already a concern due to transfusions. Giving iron-rich foods or supplements without checking with a doctor can worsen iron overload.
2. Never skip chelation therapy: Even if your child is unwell or hospitalised, chelation must continue unless your doctor says otherwise. Chelators are lifesaving drugs that prevent iron-induced organ failure.
3. Say no to miracle cures: “Families often turn to unproven herbal remedies, hoping for a cure. This can delay real treatment and cause harm,” Dr. Mishra warns. Stick to evidence-based care.
4. Don’t ignore growth or behavioural delays: Delayed puberty, short stature, or mood issues can signal complications like endocrine or neurocognitive problems. These need medical attention, not dismissal.
5. Don’t delay transplant or gene therapy discussions: Bone marrow transplant (BMT) or gene therapy may offer a cure in eligible children. If your doctor recommends counselling, explore your options promptly. Delays can reduce success rates.
Progress Through Prevention And Empowerment
Although managing thalassaemia is demanding, access to quality care, early intervention, and informed caregiving can greatly improve quality of life. It is well documented that improved caregiver education is directly linked to better health outcomes in thalassaemia patients. A recent phase 3 trial published in The Lancet in November 2024 highlights the potential of gene therapy in achieving transfusion independence for patients with transfusion-dependent β-thalassaemia.
This study underscores the importance of exploring advanced treatment options and staying informed about emerging therapies. While it doesn't directly address caregiver education, it emphasises the evolving landscape of thalassaemia management, where informed caregivers play a crucial role in navigating treatment decisions and supporting patients through complex therapies.
As Dr Mishra emphasises: “Thalassaemia may be inherited, but what we do after a diagnosis can shape a child’s entire future.”
Kirti Pandey is a senior independent journalist.
[Disclaimer: The information provided in the article, including treatment suggestions shared by doctors, is intended for general informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.]
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