By: Eesha Duggal
How many of us know about Thallasemia?? Pretty obvious many of us visiting HimVani. But I bet if one moves around and asks people about it, many would roll eyes up and down in wonder. With an aim to spread awareness about Thallasemia amongst the people, UMANG- a foundation for children with Thallasemia has been set up in Himachal.The inaugural workshop was held at Bachat Bhawan, Shimla last weekend.
Workshop on Thallasemia- Role of Society, witnessed the presence of doctors,medical students, media, Thallasemic kids and their parents. Dr. Ashwani Sood of IGMC gave a broad outline about incidence and awareness of Thallasemia and the suffering of children affceted with the disease. He also highlighted the role of society in helping the affected kids to make their living more comfortable.
“Thalasemia is an inherited autosomal recessive blood disease in which the rate of synthesis of one of the globins chains that make up haemoglobin is reduced. Thalassemia can be minor, major or intermedia and its clinical features include pallor, irritability, failure to grow, feeding problems and as it proceeds, cheek bone under the eyebrow becomes prominent”, said Dr. Sood. There are 60 to 70 children affected by Thallasemia in Shimla, 150 to 200 in Himachal and 5 to 10% people are carriers of the disease. Till now, there have been isolated contact programs and camps to help these children but Umang can take pride of taking first concrete step in this direction.
The foundation has been started with some objectives in view. Founder Convener of Umang Mr. Ajai Srivastava expressed his ideas in support of formation of Umang. “First and foremost aim of our foundation is to spread awareness about Thallasemia. People are still ignorant about this problem. Also medicines required for this are very costly. So we are planning that either this expense be reduced or even terminated”, he said.
He also asserted that children should be given medicines for free. Umang also aims at giving financial assistance to these children at school and university level so that they continue with their studies. “Many a times it so happens that children do not get blood donors, especially in winters, so we are thinking of arranging 5-6 permanent donors for each Thallasemic child”, said Srivastava.
Parents of children with Thallasemia present in the workshop spoke of their expectations from the foundation. At the time of transfusion they face problems as their children have to share beds with other patients. They requested the doctors present including the special guest Dr. R.K Kaushal,Professor and head of Pediatrics, IGMCH, to provide separate beds for their kids. They assumed that it would be better if there is a particular room where everything from medicines to syringes to doctors can be available, since parents and relatives of such children cannot take on the job of rushing to different departments at the time of emergencies.
Little girl Jasmine present in the workshop started crying as soon as she heard the word hospital and how she would have to run from one department to another with her parents. Members of various NGOs, doctors, media persons and other members associated with Umang assured the parents that the foundation will help them in every way possible. It will keep organizing such workshops and camps in near future.