It was around July last year when we decided to put laziness behind and initiate the Sunday get-together for Thalassemia. There was a situation where several parents wanted to meet us and have discussions about various issues faced by their children. We earmarked Sunday as a day for all those meetings with the parents, exploring the strategies to improve the management of the disorder as well as take small steps in direction of the cure.
To start with Sunday was chosen to be the day when the children who are undertaking hydroxyurea therapy come for weekly follow-ups. This way they did not have to miss school and yet we could monitor the children systematically. It’s almost six months now and almost all the children have shown remarkable improvement in one or more of the following four parameters which were targeted; the ferritin levels, the overall transfusion requirement, the liver size and the spleen size. The children are doing much better and the parents are overjoyed. A marked change we feel in the centres on Sunday are the decibel levels. The children who used to be reclusive and shy now create such a riot while they wait for the lab test reports to come.
The painless test of hope - the HLA tests - is the other major activity which has been taken up on Sundays. We have organised 5 rounds of HLA tests for the needy patients. HLA test is the first step to determine whether the child can proceed for Bone Marrow Transplantation. So far in our country, it is left to the parents to take a call on whether they can afford transplants or not. If they can, then they proceed with HLA typing at their own cost - which is about Rs 20,000/- upwards per family. The way we choose to work is that we evaluate all our children based upon their medical suitability for transplants. Those who are likely candidates for transplants are offered free HLA tests. If nothing more, at least hope must be secured for one and all.
The Sundays also enabled monitoring of those children who were being prepared for transplants. Every week, the three children who Sankalp is supporting for transplants came for their weekly evaluation. The local doctor collaborated with the transplant physicians to decide the treatment course. With 2 of the 3 children moving to the next stage now we have another few who are joining the preparation queue.
The Sundays also have participation of volunteers from various walks of life to participate in making thalassemia management better. They help the parents with documentation and record keeping, streamline the Sunday mela and make sure that the children are back home as soon as possible.
Meeting with the parents is an integral part of the Sunday activity. We get parents from all over Karnataka who come to meet on Sundays. They have so much to share - so much to ask and so much to know. While experience sharing is important, the most important outcome of such meetings is that we try to see how we can help the families better. We also try to connect the patients to the relevant service providers, experts and centres where the help needed is still not being organised by us.
We at Sankalp strongly believe in unburdening each family of a person suffering from thalassemia from having to fight their own battle and rather fight the disorder together for one and all. Sunday meetings have played an important role in making sure that the families come together and leverage the power of we to ensure the best for each child. Thanks to the immense support from medical experts, lab service and from the pharmaceutical beside the numerous donors and the feeling that we get from the bustling activities around thalassemia management is that of hope and bring future.
If you are a thalassemia patient or a parent wanting to discuss thalassemia prevention, management or cure, please come for these meetings.
If you are a volunteer willing to spend 3-4 hours each weekend, please feel welcomed to join in.
If you are a donor or if you wish to contribute in any other way, drop in on a Sunday to see how each little bit of contribution can be judiciously put to use and be translated into ample smiles.