Giving our children better treatment, Better care and a Better life.
Thalassemia Society Pune Chapter (TSPC) was founded by the parents of Thalassemia Major children in 1991. The poor state of welfare of people with Thalassemia, unmet needs such as shortages of blood for transfusion, delays in the adoption of advanced management procedures such as chelation therapy made a few conscientious parents come together to form a society for the benefit of those who were affected by the disease; especially families and children from lower socioeconomic strata of the society.
We are an internationally recognised NGO, driven by parents of patients with Thalassemia Major and medical advisors, where we work to Care-Cure-Curb Thalassemia Major by:
Patron
President
Vice President
Secretary
Jt. Secretary
CFO
Treasurer
Jt. Treasurer
Executive Member
Executive Member
Medical Advisor
Medical Advisor
Executive Member
Counsellor
Design Consultant
Project Head
Media Consultants
Diagnosed at the tender age of 3,
Jatin encountered a tumultuous path
marked by not just the physical burden of Thalassemia but also the additional weight of the social stigma. His early years were marred by a lack of focus on education, as societal misconceptions often overshadowed his academic pursuits.
The common belief weighed heavily
on young Jatin – that those with Thalassemia major were expected to
live only until 20. This belief intensified the social stigma around his condition.
Today, at 47 years of age, he not only leads a happy & dignified life but also owns and operates a successful coffee shop at KEM Hospital.
More so, his inspirational journey is marked by selfless contributions, as he actively engages in organizing blood donation drives and extends genuine assistance to fellow warriors in navigating their physical and mental well-being. Jatin alone has organized above 150 blood donors in the last one year.
Simran's journey commenced in November 1986, when she was diagnosed with Thalassemia Major, and at just a delicate age of 3months, Simran started her blood transfusions, casting a lingering shadow of isolation over her childhood.
By age 7, the prospect of a BMT arose for Simran as a beacon of hope, offering the promise of a lifetime free from transfusions. However, despite the agonizing procedure, which even involved significant hair loss, her body rejected the donor's marrow, creating an exceptionally challenging scenario emotionally and physically for Simran and her family.
Over the years, Simran learnt to navigate around her condition. However, it was only until a pivotal moment where she found strength and resilience to embrace a life of her dreams - Participating in advocacy sessions and conferences with Dr. Munshi, representing TSPC, she found solidarity and learnt of other Thalassemia Major warriors excelling academically and forming profound social bonds. The power of community transformed Simran's perspective on Thalassemia, empowering her to lead a more fulfilling life.
TSPC played a crucial role by providing her a positive outlook on life, developing life-long bonds, offering her access to medical expertise, emotional counseling, and subsidising crucial medical interventions, allowing her the disposable income to pursue her dreams and indulge in her passion fortravel.
Now, at 37, she is a happily married, financially independent woman, steering a thriving corporate gifting business. Simran's story is not just one of resilience but a testament to the strength that emerges from community and self-belief.
