This personal account by Saanya Gulati reflects on the lived experience of thalassemia in our family and the importance of greater awareness. You may be wondering what Thalassemia is. The fact that most people have either not heard this word, or heard it but have a vague idea of what it entails, is part of the problem. It’s unlikely that I would have known about Thalassemia, if my family hadn’t experienced its effects first-hand. Thalassemia is a genetic disorder that doesn’t allow the body to produce normal blood. If both parents are carriers of the Thalaessemia Minor trait, there’s a high chance (25%) of their child contracting Thalaessemia Major. However, carriers show no symptoms of the disease, hence several cases go undetected. A simple test can determine whether one is a carrier, but lack of awareness results in 100,000 Thalassemic majors born across the world each year. In December 2014, I lost my aunt to Thalassemia. Unfortunately, I never comprehended the magnitude of the disease until her demise. Weekly blood tests, monthly transfusions, and daily medication were built into her routine, but that did not stop her from living a normal life. She worked longer hours than me, worked out almost everyday, and had an active social life. This is not uncommon for patients, provided one regularly checks iron levels, and doesn’t over-exert. Every fourth Sunday, we would spend 7-8 hours in the hospital while she underwent her blood transfusions. “Don’t bring your friends to the hospital,” she would warn, if I were meeting someone at the market nearby. At her workplace, few colleagues were even aware of her condition. I didn’t give much thought to the willpower it must have taken my aunt to deal with Thalassemia, because she rarely complained about it, or made it seem like a burden. It was when her body developed a fatal infection overnight that rendered her unconscious for 10 days that the reality started to dawn on me. The doctors were surprised to see a 47-year old patient with Thalassemia Major. It was unheard of. According to the American Academy of Family Physicians, most thalassemic patients die before the age of 30. These deaths are primarily due to excess iron that develops in the body from years of blood transfusions. Iron chelation, the process of removing excess iron from the bloodstream, was first introduced in the 1970s. Until then, most Thalassemic patients, like my aunt, effectively lived with iron poisoning. Life expectancy of Thalassemic patients is predicted to improve as iron chelation medication advances, but it remains costly, and has several side effects. My aunt was a fighter, but Thalassemia is a daily fight against life: a battle that no one should have to wage. My aunt did not talk much about Thalassemia, because she didn’t want people’s sympathy. Today, I am not telling her story so that you can feel sorry for her, but because I believe it’s important to talk about Thalassemia. My family didn’t talk enough about it, and as a society we rarely talk about it, owing to a large awareness gap. 10,000 children with Thalassemia Major are born each year in India alone, as per the latest figures available. The MR Foundation was set up by my family to support families who don’t have access to the financial resources or medical facilities that the condition demands. It also works to raise awareness about Thalassemia by encouraging early testing. I hope you will join us in this journey!