Trigger warning: Mentions of suicide
“If I can feel grateful despite the uncertainties I tackle every day, anyone can.”
This is what Parameswari T, a 25-year-old influencer from Trichy wants every follower of hers to feel. Her infectious enthusiasm, coupled with a sharp sense of humour, makes it easy to forget that she has been battling thalassemia major since childhood. She has not only survived the genetic blood disorder but thrived, building a life that inspires thousands online.
What is a thalassemia major?
Thalassemia major, a genetic blood disorder, is passed down when both parents are carriers of the thalassemia trait. Parameswari’s family knows the devastating impact of this condition all too well.
“Both my parents were thalassemia carriers. I had an elder brother whom we lost because of thalassemia. He died when he was three months old because there was no awareness of thalassemia at that time. My paternal uncle also lost his life when he was nine because of the disease.”
“When you have thalassemia, there is a lack of production capacity of RBC and it gets destroyed easily. The only treatment for this is blood transfusions which have to be done every month,” Paameswari explains. “Blood decreases, we inject more, and the cycle continues throughout our lifetime,” she says.
While a bone marrow transplant offers a potential cure, it requires a suitable donor; this wasn’t a viable option for Parameswari during her teen years. “The success rates were significantly lower a decade ago; Now it is better but I have crossed the age limit,” adds Parameswari, which forces her to rely on blood transfusion and medication along with doctor visits for survival.
A wake-up call
While Parameswari now radiates positivity, her childhood was marked by the challenges of living with thalassemia major. “I had the normal life of a sick kid,” she recalls. “I used to get an ailment yearly once, which was followed by hospital visits and medication.”
“I was very idle as well,” she confesses. “I was questioning my existence and I even wished I was never born.”
“My siblings used to look very nice and groomed up and they had their individual lives, but I just couldn’t accept myself for who I was,” she shares. This struggle was compounded by social isolation and bullying. “I did not have any friends, and people used to make fun of me for my appearance.”
“My health issues were pathetic and most importantly, I did not have the mindset to tackle it well during my teens,” she says. “I’ve gotten three surgeries to date – spleen removal and an angio for the hole in my heart, and I had convinced myself that my purpose of living was to go to the hospital, take medication, stay at home and wait till this ended,” she shares, a reality for many battling a terminal illness.
These frequent health issues forced her to discontinue her schooling at the age of 15. “I thought that I would die when I reached 16 because, at that time, I read an article that claimed that the life span of a thalassemia major patient was between 15 and 18,” Parameswari recalls. Faced with this perceived deadline, Parameswari resolved to live her life to the fullest.
But Parameswari reached her 18th birthday — a milestone she never expected to see. “That was a wake-up call for me. I didn’t have my education to back me up, and I didn’t know much about the world,” she shares.
While Parameswari is currently pursuing her undergraduate degree at Bharathidasan University, a government institution, her educational journey wasn’t conventional. After dropping out in class 9, she later cleared her class 10 board exams through a private institute but took a break afterwards.
“YouTube made me realise the importance of education and having a degree. I knew I’d regret not completing it,” she shares.
Motivated by this, she resumed her studies and is set to graduate this year.
Parameswari’s journey to self-acceptance had been long and challenging, but in her late teens, a crucial shift occurred. “I started living only after I turned 19,” she declares.
She embraced her physical limitations. “I accepted that I am short and this was the lifestyle that I needed to embark on.” This newfound acceptance unlocked a world of possibilities and this exploration led her, and her three siblings, to the world of YouTube. “We started it just for fun where I would post videos of me cooking, going out — just everyday things.”
Parameswari quickly recognised the power of social media to create real change. “My sister started this out of the blue, but she put her time and effort into making every content look great,” shares Roshan, Parameswari’s younger brother who is pursuing a law degree.
“Now, I use my platform to spread awareness about thalassemia,” Parameswari says. She began educating others about the crucial importance of carrier screening. “You can be a carrier without knowing it, but if your partner isn’t a carrier, then your child will be safe. Without prior knowledge, the risks are high,” she explains, a message she shares widely on her social media platforms. “I also began sharing my monthly hospital visits and other health-related videos.”
“A lot of parents have contacted me saying that their child has been affected with thalassemia and they get worried about their child’s life,” she shares. Drawing from her own experience, she offers reassurance and hope.
“I always tell them not to worry because I have been able to survive till 25 years of age with poor treatment. With medical advancements and treatment, their child would be just fine,” she shares.
“Through YouTube, I have been able to suggest hospitals for other Thalassemia patients or sometimes arrange blood for transfusion as well,” she explains.
‘I want people to feel grateful for what they have’
Parameswari’s motivation for creating online content stems from a deep desire to inspire others. “People have asked me why I take the trouble of uploading videos every day despite my health condition,” she says.
Her experiences have given her a unique perspective. “Only post my teenage years, I understood that other people are living in more challenging conditions than what I am facing. Somewhere in the corner, when people watch my videos, I want them to feel grateful for what they have right now,” she shares.
“She is very determined, focused, and truly a fighter,” shares Roshan with a smile.
Parameswari has accepted that her lifespan may be shorter than others, but she refuses to dwell on it. “If I spend time overthinking and handling breakdowns, I’ll miss out on creating good memories before I go,” she says. While she still faces difficult moments, she has learnt how to manage them.
Suicidal thoughts are common among thalassemia patients due to the daily struggles of living with the condition. “When it gets overwhelming, I take a three-day break and focus on what makes me happy — good food, movies, trips, and time with friends. It helps reset my mind, and I return to my routine feeling better,” she shares.
‘I manage it one day at a time’
While the monthly process of blood transfusion in itself is challenging, arranging for blood often becomes a daunting task for thalassemia patients.
COVID-19 made accessing blood more difficult. “Before COVID, the blood bank arranged our supply, but donations dropped significantly afterwards. Fewer donation drives in schools and colleges, along with restrictions on private blood banks, have forced us to arrange two units every month,” she explains.
She considers herself fortunate to be O-positive, as those with rare blood types struggle even more. “I’ve tried seeking donors through YouTube, but I don’t want to exploit my followers. Still, many kind people have stepped up after seeing my videos,” she shares.
Her monthly routine includes a doctor’s visit, blood tests, and transfusions. However, frequent transfusions cause iron overload, leading to complications. “Iron, which is essential for others, is poison for me. It accumulates in my organs, increasing the risk of liver damage and thyroid issues — one of the reasons thalassemia deaths are high,” she explains.
To prevent organ failure, she takes daily medications and follows a strict diet. Every three months, she visits CMC Vellore for organ checkups. “It’s a constant battle, but I manage it one day at a time.”
Supported by the best
“My world was small, centred around my family. As a teenager, I didn’t look my best, but not once did my family make me feel less. They always complimented me — my hair, my clothes, everything. They accepted me long before I could accept myself,” she recalls highlighting the importance of family support.
Today, Parameswari has a strong circle of friends who understand and support her. Through her videos, she has also connected with others living with Thalassemia. “We hang out, go on trips, and have the funniest conversations — talking about our medications, doctors, and diets,” Parameswari says.
“I was missing these conversations in my life. Knowing I’m not alone, that there are others on this journey with me, keeps me going,” she adds.
“According to me, there are only two ways in life — either you crib every day about how difficult your life is or you have a positive attitude to handle everything that comes your way,” she says.
Edited by Arunava Banerjee; All images courtesy Parameswari T
