Sankalp Program for Thalassemia Management

Last year, we had shared how extremely high ferritin levels are being controlled using a combination of deferasirox and deferoxamine at our centres. "A Novel approach to control very high ferritin levels - our experience - (Volume 6 Issue 8 September 2016 Pg 6-7)" Iron overload is the root cause of the complications associated with thalassemia. Even for those children who find a match and thus have a chance to get cured - bringing down the ferritin levels is the first step towards transplantation preparation.

He may just pass on as just another man from the hinterland of Bihar when you first see him. Vijju’s looks of-course don’t give out the determined and courageous soul inside. He is the father of little Chetan - a child from Bhojpur, Bihar who suffers from thalassemia. He is a man who did not let limited financial means, travelling long distances and pressure from his family come in the way of ensuring that good treatment was available for his child.

Sankalp Program for Thalassemia Management is aimed at ensuring that adequate and appropriate care is provided to each child taking coming to our centres. The overall aim is to resume normalcy in their lives. A key component in this pursuit is reducing the time it takes to provide appropriate medical intervention. For individuals who need to come back for follow-up every few weeks and for patients who travel long distances to seek care, every hour saved matters a lot.

Parents of thalassemic children have several queries regarding the treatment regimen and overall health of their children. Factors that affect growth of the child comes out as a major concern in interaction with parents. In this article, we look at a 2 important aspects which lead to deterioration in growth factors for children with thalassemia and the possible remedies.

Last month we cross the 1000 mark for the number of blood units being transfused to patients suffering from thalassemia across the state of Karnataka. We must congratulate Rashtrotthana Blood Bank- Bangalore, Indira Gandhi Institute of Child Health-Bangalore and K L E Society Hospital and Medical Research Centre Blood bank for ensuring continued supply of safe and voluntarily donated blood for each of our patients completely free of cost.

After the end of a long busy day as I sat to look at some videos, I got a call from Dr Reshma. She informed me that a child who is taking treatment at our centre needed an urgent appendicectomy – removal of his appendix which had become infected and inflamed. It was a Saturday night. The patient had travelled from a place 200km away from Bangalore and reached a prominent Government Hospital in Bangalore for the urgent surgery. However, there was no surgeon available at the hospital.

When I walked up the stairs of Samraksha today I realised that a little girl was peeping down from the stairs. The look in her eyes told me that she was waiting for me. I shared the usual pleasantries with the family and walked across a hall full of children and parents straight to the doctor's room. We had a meeting scheduled for the day and soon I found myself with 2 of my friends in a room discussing the future roadmaps.

Project Samraksha, the Thalassemia Day Care Centre at Rashtrotthana Parishat celebrated the World Thalassemia Day on the 8th May 2016. The event was eagerly awaited and carefully planned by the children themselves.

Sankalp India Foundation together with KLES Dr. Prabhakar Kore Hospital and Jawaharlal Nehru Medical College start a thalassemia day care centre in Belgaum

Sankalp Program for Thalassemia Management took a leap forward on 5th May 2016 with the inauguration of the 'Jai Shivshakti Center for Thalassemia Management' at KLES Dr. Prabhakar Kore Hospital and Jawaharlal Nehru Medical College, Belgaum. The centre was inaugurated by Dr Lawrence Faulkner, who has been our guide, strength and inspiration.

Indira Gandhi Institute of child Health celebrated the World Thalassemia Day on 29 April 2016

28 April 2016 , Bangalore

The Thalassemia Day Care Centre at Indira Gandhi Institute of Child Health celebrated the World Thalassemia Day on the 28th April 2016. The event saw enthusiastic participation of the patient families and the medical team alike.

As little children, we all looked forward eagerly to the summer holidays. For the team at Project Samraksha and the school-going children who come for treatment there, the anticipation for the summer holidays is just the same, however for a different reason. We plan to make use of every holiday season to give deferoxamine infusion to the children who are not responding sufficiently to oral chelators. Deferoxamine infusion can be very effective in controlling iron levels in the body.