AT THE age of 80, Jasmine Majethia doesn’t use a smartphone and relies on her grandchildren to book a cab for her when she steps out of her home in the Pune suburb of Bavdhan. But when it comes to helping children affected with thalassaemia – a genetic blood disorder – Majethia is a wall of support for hospitals and charitable trusts across Maharashtra over the last 40 years.
“There are so many shocking stories. Once, I came across a family from Rajkot where the woman committed suicide as all her three children were detected with thalassaemia and required blood transfusions every month,” says Majethia. “These stories trouble me a lot.”
Majethia started as a liaison officer at the LTM Medical College and Hospital in Mumbai’s Sion before becoming the chairperson of Mumbai Thalassaemic Society while helping to set up blood-cell counter machines at civic-run hospitals in the city.
She is now an advisor with the Pune chapter of the Thalassaemic society. And on the way, she has played a key role in pushing the cause of thalassaemia for organisations, such as the Parent’s Association Thalassaemic Unit Trust (PATUT).
Thalassaemia affects more than 1 lakh children in the country, according to a paper published in the Paediatric Hematology Oncology journal.
The disorder appears in two types, according to Dr Nita Munshi, Thalassaemia Society, Pune chapter. “Thalassaemia major patients suffer excessive destruction of red blood cells (RBCs) leading to severe anaemia. The disease is life-threatening, if untreated. Thalassaemia minor is a less serious form, and normal people would not know unless they undergo special tests,” says Munshi.
“Bone marrow transplant (BMT) is a permanent cure for thalassaemics, but that comes at a cost. Typically, the cost of treating one patient could reach nothing less than an approximate Rs 15-20 lakh. Apart from raising awareness, here is where Jasmine has played a vital role,” says Rashmikant Shah, a trustee at PATUT, which is run by ghazal legend Pankaj Udhas.
“Jasmine Majethia helps connect us with benevolent people and organisations who in turn provide financial backing to poor children affected with this disorder. I have conducted over 300 such procedures. Of these at least 60 children have received financial support after she helped raise funds,” says Dr Vijay Ramanan, who heads the Thalassaemia Society of Maharashtra.
“Thalassaemia affects the production of haemoglobin. The transplant involves Human Leukocyte Antigens (HLA), which are present on the surface of body cells. Usually a brother or sister is the best chance for an HLA match. Hence, in a bone marrow transplant, it is important to find a donor and recipient whose cells most closely match,” says Shetty from PATUT.
A recent success story scripted by Majethia is that of six-year-old Chetasree Mukane, the daughter of Avinash, a house painter from Palghar district. “My daughter underwent repeated blood transfusions and doctors advised us about BMT. We fell short of the cost by a couple of lakhs. But PATUT managed the funds,” says the father.
“You have to demand, nobody will hear your requests,” says Majethia. “A zero thalassaemia birth rate in India by 2020 is the mission of my life. And I am not ashamed of knocking on doors for help. Thalassaemia is a blood disorder that can be inherited by anyone,” she says.
Such is Majethia’s popularity among Maharashtra’s medical fraternity that Pune-based neurologist Dr Rajas Deshpande described her in a social media post last week as “a spirit with an energy to defeat ten ripped-jeans-teenagers”. The opening line of the post, titled ‘Goddess of Humanity’, read: “Little did I know that I would meet someone who changes lives by example.”