23rd March Bangalore
With the support of DKMS Germany and Cure2Children, Italy, Sankalp India Foundation has been offering free HLA typing to patients from all over the country. Several of these patients find a match within their families. Once the match is found, starts the journey of screening and preparation for the transplantation.
The first step is intense and interactive counselling. Families are educated about the various aspects of bone marrow transplantation and all the processes involved. They are told about the risks involved, the options the family has, the costs, the support program pre- and post- the transplantation itself etc.
Once the families have understood the process well and are still keen to proceed with the transplantation a thorough pre-transplant evaluation is done. This helps identify any issues which may have impact on the decision to transplant or which may influence the outcome. The end result of this evaluation is a treatment plan for preparing the child for the transplantation which may range from few weeks to sometimes even years. Available option to prepare the child for the best possible shape for transplantation are used which include use of appropriate blood transfusion schedules, aggressive use of iron removing medicines, use of hydroxyurea etc. Beyond this point the child is monitored every week till he/she is fit to be posted for the transplantation itself.
The above process is carried out on a regular basis at Project Samraksha, Rashtrotthana Parishat. Every week 10-12 patients follow up during the counselling and preparatory phase of the transplantation.
"However, we had an amazing situation on 23rd March 2016 when 9 families came all together to get started on their journey for Bone Marrow Transplantation from Rajahmundry, Andhra Pradesh. It was a sort of milestone in our journey to offer cure to as many children as possible."
While it’s true that the 2 day program was packed with work, the families did spend time understanding more about proper thalassemia management as well. We are happy to be associated with Gowthami Netralayam who have helped transformed the access to care and management for thalassemia in Rajahmundry and nearby places.
Probably the best outcomes was that we hope to not only provide access to transplantations to these children, but also, enable the others around them get better care and management.