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Dr Nalini Parthasarathi, 79, based in Puducherry has dedicated 30 years of her life caring for people suffering from hemophilia.
It is amazing when a person turns personal adversity into a calling, and extends empathy to make a significant impact in the lives of other people. This has been the life’s journey of Dr Nalini Parthasarathi.
April 17 is World Hemophilia Day. Dr Nalini Parthasarathi, 79, based in Puducherry has dedicated 30 years of her life caring for people suffering from hemophilia. She was honoured with the Padma Shri in 2023.
Hemophilia is a condition where one or more clotting factor is absent leading to bleeding. Severe cases can be life-threatening.
It was her poor health during her childhood and growing years that made Dr Nalini a compassionate doctor. She was hospitalized repeatedly and had multiple surgeries in childhood. She turned her adversity into an opportunity to help others.
Undeterred by her uncertain health, she was an excellent student both in school and college. “My poor health motivated me to become a doctor. Also, having met so many doctors through my childhood, I was naturally attracted to the profession,” she says. Completing her MD in pediatrics at JIPMER Puducherry, she worked there as a consultant.
“I looked after thalassemia and leukemia patients at the hospital. Since I was handling blood disorders, people started bringing their children with hemophilia to me. I underwent special training in pediatric hematology with special reference to hemophilia, maternal and child health and neonatalogy,” relates Dr Nalini.
She has practised as a pediatrician for 50 years. “I have always had empathy for my little patients because of my own illnesses in childhood. In fact, I know all about the families of my child patients,” she says with a smile.
Her deep desire to help children and adults suffering from hemophilia led her to take voluntary retirement from JIPMER. She established the Hemophilia Society in Puducherry, of which she is founder-president. She was also instrumental in setting up the Hemophilia Society at Karaikal.
She has raised awareness about hemophilia in and around Puducherry. Thanks to her continuous efforts, treatments for persons with hemophilia are today available in Puducherry and Karaikal. For her contributions, Dr Nalini is fondly known as the ‘Mother Theresa of Puducherry’.
Dr Nalini has published more than 100 papers in national and international journals and conducted workshops all over India. She has contributed articles in newspapers and magazines on hemophilia. She has also participated in radio and television programmes.
“Not much was known about hemophilia in those days. It was known as a ‘royal disorder’ as many members of Queen Victoria’s family had the disorder. Hemophilia is a deficiency disease. There is one or more clotting factor in the blood that is absent in those suffering from the condition. So, when blood oozes it does not clot. Sometimes, for months together, bleeding continues. Hemophilia is a genetic disorder and women are usually carriers. Their male offspring have a 25% chance of developing the condition,” she explains.
According to statistics, around 1 in 10,000 people in India have hemophilia. But mild cases don’t come to hospitals. So, the reported figures are only the tip of the iceberg. In the all-India registry, only four lakh people with hemophilia are registered.
Bleeding can occur into joints, muscles, or organs like stomach or kidney. Hemophilia can often lead to emergency situations.
“We did not have proper investigation facilities at JIPMER to confirm the diagnosis for hemophilia. At that time, treatment also involved giving plasma and blood which in some cases led to the person contracting HIV,” she rues.
At that time, CMC Vellore had training facilities. JIPMER deputed a doctor and lab technician for training to CMC. They came back to set up a coagulation lab in JIPMER. “I learnt about the Hemophilia Federation India in Delhi which provides treatment by giving intravenous injections of the ‘clotting factor’. The medicine is very expensive and was imported at that time. A vial with 500 units costs Rs 10,000 today and is not available commercially.”
Dr Nalini started the Hemophilia Society, Puducherry chapter, informally in the early 1970s. Initially, she had 20 patients and the society was running from her office. Diagnosis and treatment (factor) are given free for all patients at our chapter.
Physiotherapy is an important part of treatment. Swimming and cycling are also good activities for those suffering from hemophilia. “If there is a family history of hemophilia, women should get tested before marriage. If one child has hemophilia, I tell women not to have a second child,” says Dr Nalini.
JIPMER is a busy place and she could not do much for patients of hemophilia. “We went in a group to the Chief Minister and said we wanted to start a small centre. He gave us a small piece of land. In 2003, he requested Indian Oil Corporation (IOC) to build the centre for us with CSR funds. In 2005, we inaugurated our centre.”
Many philanthropists have offered financial assistance to run the Hemophilia Society at Puducherry. A US organization called ‘Save One Life’ gives scholarships to 40 children having hemophilia up to college level. Our society provides financial assistance to women from poor, underprivileged segments of society who have children with hemophilia.
Today, I have 300 patients. I have patients from the age of six months to 65 years! Mothers of hemophilia patients have formed a support group. We also have a youth group as some young patients have committed suicide causing alarm in the community.
Children with hemophilia come crying to me in pain. When I give them the medicine, they go off to sleep. They get up and smile at me. Those are my most cherished moments.
I have lived alone in Puducherry for 50 years. I like the quiet atmosphere and friendly people. I enjoy the beaches. Of course, it has become crowded now.
As for the Padma Shri I received this year, I have dedicated it to the hemophilia community, especially my children with hemophilia.
Image source: YouTube
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