Health
World Thalassemia Day 2021: Thalassemia Burden Increases in Covid-19 Outbreak
World Thalassemia Day It is observed on May 8th each year to draw attention to thalassemia, a blood disorder characterized by abnormal formation of hemoglobin. In India, more than 10,000 children are diagnosed with thalassemia each year. Parents, who are usually asymptomatic, are carriers of the disease and have a 25% chance of passing the disease on to their children.
Thalassemia patients are primarily children who have had painful blood transfusions for several years in their lives. Blood transfusions pose challenges and risks for patients. Given the case of thalassemia in India, the burden of illness is significant and requires immediate attention. Blood stem cell transplantation is the only therapeutic intervention available in thalassemia patients for their normal lifespan and without blood transfusions.
COVID-19 case study
During the pandemic, patients with thalassemia, blood cancer, and other blood disorders are becoming more and more difficult. Currently, such patients have limited access to treatment as hospitals across the country are forced to manipulate resources and energy to cope with the surge in Covid-19 cases.
Patients with blood cancer and other blood disorders suffer from immunodeficiency. Even normal respiratory viruses are a problem, and the spread of the coronavirus is a major risk to patients.
These patients are more susceptible to infection than any other group because the treatment itself destroys their immune system and replaces it with donors. Therefore, managing these high-risk patients is also difficult in this situation.
Role of hematopoietic stem cell transplantation
With advances in the medical field, thalassemia major, once considered a lifelong blood transfusion, iron overload, and a troublesome illness with a limited lifespan, has changed over the last decade with hematopoietic stem cell transplantation.
In blood stem cell transplantation, stem cells are taken from the donor’s blood, destroyed in the bone marrow, and then transplanted into a thalassemia patient. Only 30% of patients in need of a transplant have a HLA (Human Leukocyte Antigen) -matched donor in their family, and the rest depend on unrelated donors.
Patients and donors from India have unique HLA characteristics that are severely underestimated in global databases, making it even more difficult to find a suitable donor. Indian patients mainly need Indian tissue matches. This calls for increased awareness and the need to encourage Indians to register as potential blood stem cell donors.
How to register?
Registering as a potential donor is a simple process that can be done through the online portal of the stem cell registry. When you sign up, you will receive a DIY home swab kit to take a sample cheek swab and send it back to the registry.
When an individual appears as a match for patients with blood cancer, the individual’s blood stem cells are obtained from the bloodstream using a procedure called peripheral blood stem cell collection. It collects only blood stem cells, similar to the donation of platelets. ..
-Article by Patrick Paul, CEO of DKMS BMST Foundation India
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