The Happiest People Are Not Those Getting More, But Those Giving More
Patient
India
On this International Thalassaemia Day, I honour my story by dedicating it to my parents, siblings, doctors, mentors, and all my friends who show me unconditional love. Special thanks go to the Thalassaemia NGOs for organizing informative conferences and to my parents for their unwavering hope.
At 47 years old, I am a patient with thalassaemia reliant on transfusions. The loss of my younger sister in 2010 marked a decisive moment, and throughout my journey, I’ve said goodbye to many friends. Yet, I persist.
My family—my parents and elder brother—have been my pillars of strength, always encouraging me to press on. Although my father has been paralyzed and unable to speak for the past five years, I find solace in being able to give back to him in his time of need.
Our resilience has enabled us to flourish like a sturdy tree that provides both fruit and shade. It brings me joy to witness the success of many friends in the Thalassaemic community through our combined efforts.
I’ve earned the affectionate title of ‘Jagat Mata’ (mother of the world) among those in our community who had lost hope. While I never believed in magic, reaching 47 feels like witnessing a miracle.
Today, I am elated to spread awareness about new oral chelation therapies that offer improved compliance over traditional methods. This journey hasn’t been easy—I vividly remember enduring painful Desferal injections. Now we benefit from safer blood transfusions with sophisticated testing methods like BMT, gene therapy, and promising new treatments that seem nothing short of magical to me.
My identity is woven through serving others—as a giver, counselor, teacher, healer, nutritionist, motivational speaker, mentor, and mother not just to my two children but also to my aging parents. Being a beacon of hope for many drives my commitment in the fight against Thalassaemia.
Beyond leading my own NGO, I actively participate in various Thalassaemia societies. My efforts empower younger members of our community with knowledge and access to effective care.
The social stigma associated with Thalassaemia in both personal and professional environments can significantly affect a patient’s psychosocial and emotional well-being, potentially leading to social isolation. It is crucial to recognize that, as individuals with the condition, we do not need to showcase our limitations and can lead lives as fulfilling as anyone else.
Personally, I am grateful for the opportunity to devote my life to researching and developing advanced treatments for Thalassaemia. My vision and dream Is FACE-FIGHT-FINISH Thalassaemia.
Always remember, “The happiest people are not those getting more, but those giving more.” – H. Jackson Brown Jr.
Sangeeta H.Wadhwa
