New Delhi: 14-year-old girl from Bhopal, Madhya Pradesh had been leading a painful life ever since she was diagnosed with Sickle Cell Disease (SCD) shortly after birth. With frequent episodes of anemia, jaundice, swelling of joints, she required hospitalization every alternate month. Consequently, her day to day activities and education were being hampered.
For the past seven years she was being treated through medicines, however her condition showed no improvement. The girl and her family had been struggling for years, consulting multiple specialists, seeking a proper diagnosis of the disease. Over the years, her health condition deteriorated with recurrent infections, delayed / stunted growth and poor weight gain.
It was only during a wellness camp organized by Indraprastha Apollo in Bhopal, that the family met Dr Gaurav Kharya, Clinical Lead, Centre for Bone Marrow Transplant and Cellular Therapy & Senior Consultant, Pediatric Hematology, Oncology and Immunology, Indraprastha Apollo Hospitals who advised the family that the only curative option for such severe cases of Sickle Cell Disease was a Bone Marrow Transplant.
When no identical donor was identified in the family, search for an unrelated donor was initiated and fortunately two 10/10 HLA identical unrelated donors were found in the DATRI (an unrelated donor registry).
Dr. Kharya, said, ‘Sickle cell disease is an inherited blood disorder in children which is characterized by defective haemoglobin (HbS) that causes health complications like yellowish color of the skin (jaundice) or the whites of the eye (icterus), perpetual fatigue, frequent infections, delayed growth, stroke, acute chest syndrome, kidney damage etc etc. Sickle cell disease can affect multiple organs of the body.
In this case, when we examined the girl, she was already in the advanced stage of Sickle Cell Disease due to delay in appropriate treatment. The family was counselled about the need for BMT as the only curative treatment. After 2 months of meticulous preparation, we conducted the HLA matched unrelated donor transplant at Indraprastha Apollo in New Delhi. She tolerated the transplant very well and after six months of the transplant the girl is now pain free and leading a completely normal life.”
SCD is one of the most common blood disorders in the world. Unfortunately, due to lack of awareness around Sickle Cell Disease, there are a lot of children that go untreated and live their lives in constant pain. It does not only affect the quality of life but also the life expectancy. Average life expectancy of any symptomatic sickler is not beyond 4th decade in developed countries. In countries like India with limited resources and awareness about the diseases, majority kids with severe manifestation die in 1st or 2nd decade of life.
The BMT team at Indraprastha Apollo is committed towards making people aware about the disease and helping patientsget timely treatment.