Our Success Story

    “We organized the first-ever World Thalassaemia Day at the Parbhani Collectorate on 8th May, 2016. Prior to that, the district administration was not directly participating in the anti-thalassaemia efforts. The then DM, Mr Rahul Ranjan Mahiwal, responded in a prompt spirit, extending every co-operation, and the event became a success both in terms of the social participation as well as a guiding light for future journey. We were guided by the excellent speech of Dr Jayant Indurkar, who made all present aware of the dimensions of the thalassaemia epidemic, the medical issued involved, the social side, the challenges, and what could be done. That speech became our guiding light to this day.”

“Thalassaemia patients require regular blood transfusions. We felt the need to arrange for regular blood donation camps, which serves the dual purpose of supplying good, fresh blood to the patients, and increasing social awareness. The first such blood donation camp was organized by us immediately following the World Thalassaemia Day on 15th May, 2016. That was a success and culminated in a touching address by Sarita Dhas, then aged 11 and a thalassaemia patient, who thanked the efforts. Since then, about 200 such camps have been successfully organized by us, mitigating the demand of blood by the patients to a great deal. And of course, the society is now aware of the purpose of the blood donation, and its need by thalassaemia patients. Now this has become a tradition, so that the parents of thalassaemic patients are now regularly organizing blood donation camps in their own villages. The Administration is now responding with rare goodwill, and therefore the CEO of Zilla Parishad, Mr B Prithwi Raj, himself organized one such blood donation camp.”

“All the Accredited Social Health Assistant (ASHA), a workforce organized under the Ayushman Bharat Yojana, have been being trained in thalassaemia awareness since 10th June, 2016. They develop techniques of counselling affected families, screening of pregnancies, identification of thalassaemic patients. It needs be mentioned that all these ASHA workers have been attending our workshops and seminars, without any remuneration at all. The sheer number of ASHA workers can make it possible to make the dream of thalassaemia free India a reality. ”

“We have also successfully followed up with the Directorate of Health Services, Maharashtra, and ensured a regular supply of medicines to thalassaemic patients since 2016. Today, the stock of medicines at both the Parbhani and Hingoli districts have adequate supply of thalassaemia medicines for the identified cases as well as expected number of cases to come. In addition, we have successfully procured the supply of injectable medicines for haemophilia patients in these districts, as both these conditions, thalassaemia as well as haemophilia, can be fatal, for want of such an avoidable reason as the lack of proper medicines in remote areas.”

“We have also posted coloured posters and banners in all public places, frequented by masses such as hotels, function halls, marriage halls etc. making the people aware of thalassaemia, its implications, need for early identification and the advisability to avoid the birth. We also preached in the NSS camps regarding thalassaemia, and the response is kind and encouraging. We also visited the Nurses Training Centres and trained the students there in the medical management of thalassaemia. On 19th March, 2017, in the Aurangabad gathering of all retail pharmacists of Maharashtra, we made an appeal to them to ensure that thalassaemia medicines be stored in all districts in adequate quantities and be made available to the needy patients at affordable prices. The appeal was received well.”

“We must have made ourselves noticeable by then, as thalassaemic Gujrat, noted us by appreciating our efforts on 28th May, 2017, in the National Thalassaemia Meet, 2017, at Ahmedabad, Gujarat. An appreciation award was conferred on us by the hands of the Hon’ble Minister of Health of Gujarat State, Shrimati Nirmalaben Mehta, and Mrs. Shobha Tuli, Secretary, ThalassaemicIndia, as well as our poster was published there.”