Taabish’s Story – Thriving with Thalassemia Major
Thriving with Thalassemia Major
“I believe it’s the quality of life, it doesn’t matter how long I may live, but if I live well, I would have lived well. I believe these children also think the same way and want fun, want enjoyment, want creativity, want to live life to the fullest as much as they can. ” Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
“Taabish is a 17 year old boy who has been with us since 12 months of age and he’s regularly coming for transfusions” says Prof Manglani.
Taabish has Thalassemia Major and requires a blood transfusion every 15 days.
Thalassemia is a genetic disorder that affects the production of haemoglobin, the oxygen-carring protein in red blood cells. Without ongoing treatment, Thalassemia cause severe anemia and death. It is the most common inherited blood disorder in the world. To develop Thalessamia Major both parents need to be carriers and in every pregnancy there is a 25% risk of passing the disease on to the child. There is testing available and parents can have prenatal diagnosis if they are aware of the risk.
Taabish’s sister is also has Thalassemia Major but was not diagnosed until she was four years old and suffering from anemia.
“One can imagine the psychological trauma to not just to the child but to the parents and the family at large.” Prof Manglani, “palliative care is giving them , physical, emotional, social, spiritual support and through various art based therapies these supports can be offered to children and their parents, caregivers, guardians etc.”
“Since we have a large number of these children in our city, in our country, we thought it is appropriate to give them daycare. So these children come in a comfortable environment to have their blood collected, blood is sent for cross match and they receive their transfusions and go home by evening.”
“so it’s a happy thing for them because they meet their friends they don’t have to stay overnight in the hospital. We want to make the experience as enjoyable as possible for the children. That’s the reason we came up with this center with the donation from and NGO.”
“So there is no question, it is a very established fact that unless you have this palliative care in place for those who have chronic diseases or life threatening illnesses, you not going to be able to provide them with the quality that they deserve. So I would appeal to the government that this is part of medical care not something additional, this has to be there, it is a compulsory thing. It’s not optional and therefore have it everywhere.” Prof Manglani.
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– Taabish- Thalassemia day care patient
– Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
– Dr Pradnya Talawadekar, Indian children’s Palliative Care Project
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