Living with the effects and treatment for Thalassemia Major, a chronic condition affecting the blood, is something that Taabish has been doing since he was first diagnosed at 12 months of age. Thaabish requires a blood transfusion every 15 days, as does his sister, who was not diagnosed until she was four years old and found to be suffering from anaemia.
There are two major consequences of the genetic defect of thalassemia, these being severe anaemia and expansion of the bone marrow in the body’s effort to produce more red blood cells. This leads to poor growth, impaired physical activities, facial and other bone deformities, fragile bones and enlargement of the liver and spleen. If left untreated, it will lead to death within the first decade of life. The only treatment to combat severe anemia is regular blood transfusions and iron chelation therapy. (www.thalassemia.ca) It is the most common inherited blood disorder in the world.
In this latest Little Stars video, Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India says, “I believe it’s [about] 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 Manglani describes how palliative care provides physical, emotional, social, spiritual support… “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 [are] 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.”
The video features:
Taabish – A Thalassemia day care patient
Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
Dr Pradnya Talawadekar, Indian children’s Palliative Care Project