Time for youth to come forward, register as potential lifesavers
Adisease is considered rare by the World Health Organisation (WHO) when it affects one person out of 1,000 or less. There are between 5,000 and 8,000 rare diseases, most of which are genetic in nature. They usually impact children in particular, causing 35 per cent of deaths before the age of 1 year, 10 per cent between the age of 1-5 years, and 12 per cent between 5-15 years.
Over 10,000 children are born with thalassemia major every year, and over 7,000 cases are diagnosed with aplastic anemia per year. Each year, many children are born with sickle cell disease in the country, facing chronic pain, anemia, organ damage, increased susceptibility to infections, stroke, and a shorter life expectancy.
Life-threatening blood diseases such as Thalassemia, Aplastic
Anemia and Sickle cell diseases can be treated through stem cell transplants. Stem cell transplantation involves infusing healthy blood stem cells from a matching donor into a patient to restore healthy blood production.
The success of the transplant relies on a close match between the patient’s and the donor’s Human Leukocyte Antigen (HLA). Unlike blood group matching, HLA matching is complex and crucial. About 30 percent of patients in need of a stem cell donor find a match within the family, but others must seek an unrelated donor. A simple cheek swab determines HLA compatibility. For patients with blood disorders, finding a matched donor, especially unrelated, is vital for survival. Our immune system uses HLA markers to know which cells belong in our body and which do not.
Many patients are in dire need of an unrelated donor for a lifesaving stem cell transplant. However, due to the lack of awareness and general misconception about stem cell transplants in India, there are only 0.04% of the population registered as potential blood stem cell donors. This makes it very difficult for a patient to find an HLAmatched donor. Therefore, more young individuals should come forward and register as potential lifesavers.