“...Thalassaemia is no longer a fatal disease, it is a chronic disease—one that is both preventable and treatable, with high rates of survival where there is free access to quality care. This is a truly exceptional development.” - Panos Englezos, TIF President 

INTERNATIONAL THALASSAEMIA DAY 

8th of May Message 2012 

Theme: ''PATIENTS RIGHTS- REVISITED''

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Thalassaemia is one of the most common genetic diseases worldwide, with at least 60,000 severely affected individuals born every year. Individuals originating from tropical and subtropical regions are most at risk. Disorders of haemoglobin synthesis (thalassaemia) and structure (eg, sickle-cell disease) were among the first molecular diseases to be identified, and have been investigated and characterised in detail over the past 40 years. Nevertheless, treatment of thalassaemia is still largely dependent on supportive care with blood transfusion and iron chelation. Since 1978, scientists and clinicians in this specialty have met regularly in an international effort to improve the management of thalassaemia, with the aim of increasing the expression of unaffected fetal genes to improve the deficiency in adult β-globin synthesis. (LANCET, 2012) 

Are you a person with thalassaemia (PwT)?

Share your success story with us.

Write to us at: infiniteability@hotmail.com

Thalassaemics who fought with the system

“Never allow thalassaemia to hinder your road to success. I take it as a challenge and not a problem, a different ability rather than a disability—one that comes with deeper insights into the possibilities of what life may bring to us. Disease is inevitable. But whether or not it causes ‘dis-ease’ is entirely optional, just as pain is inevitable but suffering is altogether optional.”

Sukhsohit Singh in TIF Magazine, Issue 60, Dec 2011

Anjali Sardana was ranked fourth in the B Tech examinations of UP Technical University. She got the best engineer and the highest attendance awards in her college and following campus interviews, was offered a job with a reputed company. But the Mumbai-based software company withdrew the appointment when they came to know about Anjali's thalassaemia. Undeterred, she is now Assistant Professor at prestigious IIT Roorkie.She has also directed a docudrama 'New Pinch' under National Thalassaemia Welfare Society.  

Panchkula resident Sukhsohit Singh,27, was the first thalassaemic in the country to make it to the UPSC civil services but he was declared "unfit for all services" by Safdarjung medical board owing to thalassaemia. Undeterred, he fought over a year and finally with PMO's intervention he joined the Indian Defence Accounts Services (Group A) ON 13 September 2011.  

 Carving their own niche

Jyoti Arora is a young and emerging novelist from Ghaziabad. A post graduate in English Literature and Applied Psychology, she has been working as a freelance writer since 2007. Books are her passion and in the course of her career, she has abridged about 30 English classics and wrote several original books and short story collections for kids. Her debut novel ‘Dream’s Sake’ was published by V&S Publishers in April 2011 and has been getting good reviews from readers and critics alike. Read more here. 

 Sensitizing Masses

The kids having thalassemia will soon be a part of Thalassemia Society developed by the doctors at LLR Hospital, Kanpur. Dr Yashwant  Rao, paediatrician at LLR, said "In order to increase the convenience of patients and their attendants, the doctors of LLR, in collaboration with the blood bank of GSVM Medical College, decided to develop a  Thalassemia Society which will provide help to all the patients."

Most Popular

Peters M, Heijboer H, Smiers F, Giordano PC. Diagnosis and management of thalassaemia. BMJ. 2012 Jan 25;344:e228. doi: 10.1136/bmj.e228.

Higgs DR, Engel JD, Stamatoyannopoulos G. Thalassaemia. Lancet. 2012 Jan 28; 379(9813):373-83. Epub 2011 Sep 9.

Colah RB, Gorakshakar AC, Nadkarni AH. Invasive & non-invasive approaches for prenatal diagnosis of haemoglobinopathies: experiences from India. Indian J Med Res. 2011 Oct;134:552-60. Review. 

Khairkar P, Malhotra S, Marwaha R. Growing up with the families of β-thalassaemia major using an accelerated longitudinal design. Indian J Med Res. 2010 Oct;132:428-37.

Gomber S, Dewan P. Physical growth patterns and dental caries in thalassemia.Indian Pediatr. 2006 Dec;43(12):1064-9.

Fucharoen S, Winichagoon P. Haemoglobinopathies in southeast Asia. Indian J Med Res. 2011 Oct;134:498-506. Review.

Verma IC, Saxena R, Kohli S. Past, present & future scenario of thalassaemic care & control in India. Indian J Med Res. 2011 Oct;134:507-21. Review.

Muthuswamy V. Ethical issues in genetic counselling with special reference to hemoglobinopathies. Indian J Med Res. 2011 Oct;134:547-51. Review.

Wajcman H, Moradkhani K. Abnormal haemoglobins: detection & characterization. Indian J Med Res. 2011 Oct;134:538-46. Review.

Borgna-Pignatti C. The life of patients with thalassemia major. Haematologica. 2010 Mar;95(3):345-8.

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Thalassemics India is organising a small cutural program on 8th May at the Sri Sathya Sai International Centre, Lodi road from 5.30 pm-7 pm. The performances (dance and songs) in this program will be by their thalassemic children. It will be followed by a dinner for all the patients and parents.

 For details contact: Thalassemia CENTER, Thalassemics India, A-9, Nizamuddin West, New Delhi – 110013 (India). Tel: 011-24353871, 41827334 Email: info@ thalassemicsindia.org, thalcindia@yahoo.co.in, thalassemicsindia@gmail.com

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