Thalassemia is a genetic disorder, where there is defect in the alpha or beta chain of the hemoglobin. As a result, the child is born with defective hemoglobin. These kids with thalassemia major will require lifelong monthly transfusion from 6 months of age till they survive, for the rest of 40-59 years of his life. As a result of chronic transfusions, these people are at risk of secondary complications of iron over-load. The excess iron deposits in almost all the organs of the body and impairs its function. The organs particularly involved include endocrine glands responsible for the height, reproductive organs, liver, heart and so on. To mitigate the risk of iron excess, these people need to monitor their iron regularly and start on a journey of lifelong investigations and medicines. Their problems don’t end here, with so much of blood transfusion comes the risk of HIV, HbsAG and HCV types of deadly infection.
Hence the life of a thalassemic is a never ending struggle. Their monthly calendar is filled with appointments of blood transfusion, blood tests, appointments with various dexa, MRI, USG, Echo and then follow up with the reports with the hematologist, Hepatologist, endocrinologist, Cardiologist and then procure this vast number of medicines and take them. By the time he finishes doing all this it’s time for next transfusion. As a child this kid has to balance school and other extra-curriculars with this. As a grown-up it is even tougher, he has to meets the demands of the work-place with this crazy demanding schedule of transfusions, investigations and treatment.
Currently, India is Thalassemia capital of the world. We have 2,00,000 thalassemics struggling in our country. Our government is helping, our doctors are helping, a lot of NGOs are helping still almost 50-60 % have stunted growth, 30%-40% have heart, liver diseases n 10-15% have viral infections. Only 21% achieve college education, only 15% are able to get married, only 20 % are able to have a job. All this is achieved at a cost of about 1.5-2lakhs/child/year, the cost increases every year as the weight of the child increases. Now imagine a lifetime cost of a thalassaemic child will be in crores.
The only Curative option to this problem is a Bone Marrow Transplant (BMT). Bone Marrow transplant will free the child from the lifelong struggle of transfusions and the side-effects of the same. These kids can have a normal life thereafter. The challenge is to transplant the kid as soon as possible. Best outcome of transplant is seen in kids age 2-10 years of age, particularly if a matched donor is available. The success rate of BMT is to the tune of 95%.
Rudhir is comprehensive day-care centre working for thalassemia since last 2 years under 3 fronts Care, Cure and Curb. With its various collaborations it has been able to conduct multiple prevention camps in a lot of colleges of Pune. They identify thalassemia carriers and counsel them, hence prevent thalassemia birth. ANC counselling, screening and detection of a thalassemia pregnancy is possible at Rudhir.
Under the able guidance of Dr Anant Bhushan Ranade, Dr Sweta Lunkad and Dr Liza Bulsara has been able to provide free of cost treatment for all its patients since last 2 years. It is also collaborating with various other speciality doctors i.e Gastro-enterologist, Endocrinologist, Cardiologist, Gynaecologist, Foetal Medicine Expert, Orthopaedician, Physiotherapist, Specialised Nurse, and Medical Social Worker under one roof providing free comprehensive treatment to its patients under one roof. It also provides free HLA camps and identifies kids who can be taken up for bone marrow transplant which is a curative option for these patients. Cure in the form of Bone marrow transplant is also possible if a matched donor is identified. Rudhir is Unique as it provides one stop solution to all the problems of a thalassaemic.
Beyond this Rudhir is also dedicated to social and mental fitness of its patients and their caregivers. It provides a lot of activities like dancing, Drawing, Singing, Memes, Reels. These are platforms where patients put forward their part of the story in the most artistic ways for the world to see. They also make every effort to take care of the mental fatigue of the caregiver and hence they plan to start the Thalassemia Caregivers club for the caregivers.
With their continued efforts things are changing. Today these patients are living upto 6th decade. These patients are Doctors, Lawyers, Engineers, IITians and successful entrepreneurs. These achievements are not small as they have worked harder than any other person, juggling through the various appointments to reach there. It is these patients who teach everyone the true essence of life. One must salute the people living with thalassemia, the warriors, who teach everyone that life is a struggle, but never give-up.
The entire community, the patients and their family should take pride in where they reached today but one must remember theres’ still a lot of work that needs to be done. Rudhir would also like to thank and recognize the efforts of all its partners who have helped us reach this destination, Sanjeevan Hospital, Jan Kalyan Blood bank, Sudarshan Cancer Foundation, Decimate-C, Thalassemia Society of Pune, Mukul Madhav Foundation.