In the first-of-its-kind, the Sassoon General Hospital (SGH) announced a support group for the thalassemia patients. The group has around 160 children and their parents. From the problems they face while undergoing blood transfusion to societal discrimination, the platform will be used to share them with each other, and also to find their solutions. Along with that a continuous program to teach them life skills is rolled out on Friday.
“Our daughter is suffering from thalassemia. We come to SGH for blood transfusions. But, coming here is not an easy task. It is difficult to get off from work for me, and my daughter too. We have requested them to start with a daycare so that we can get hospitalised during night time also. With this, our wages will not be cut, and also our daughter can attend the school,” said Anantrao Gavhane, (name changed), who was present at the workshop at SGH.
What is thalassemia?
Thalassemia is a blood disorder passed down through families (inherited) in which the body makes an abnormal form or inadequate amount of haemoglobin. Haemoglobin is the protein in red blood cells that carries oxygen. The disorder results in large numbers of red blood cells being destroyed, which leads to anaemia.
Children with thalassemia discussed how they are discriminated at school over there dark skin colour or large size stomach, which are side effects of the disease.
Also, loss of daily wages due to frequent hospitalization was highlighted by the patient’s parents at the workshop. The parents have requested to form a daycare centre, a 24-hour bood transfusion facility, guidance for disability certificate that children with thalassemia get.
The group is formed on Friday. The special workshop for life skills was arranged. In every two months, the training for life skills will be arranged at SGH. According to doctors, skills like critical thinking, interpersonal communication skills, etc., will be taught to patients.
Dr Aarti Kinikar, a senior pediatrician at SGH, said, “We took the problems that these children and their parents face in a written format. With the first met up, we saw that they opened up a lot and shared many issues with us. The purpose of the support group is to teach them with life skills, find out the problems they face and give them solutions for the same.”
She added, “ We have received demands that we should start blood transfussion facility during night time, so that daily wages of the parents are not lost. On such demands, we have started to think about what can be done.”