Often misunderstood as a condition that affects only males, symptoms in women are many times ignored or misdiagnosed, say doctors
Padmavati Prabhu
Panaji
E
arly diagnosis, access to treatment, and a strong support system can entirely change the outcome for a person with haemophilia, said Dr Ramnath Nevrekar, Associate Professor at the Department of Medicine, Goa Medical College (GMC), Bambolim.
Doctors, however, said that there is a lot of fear, shame, and misinformation surrounding haemophilia, which prevents patients from seeking help and taking timely treatment.
“Many people mistakenly believe it is contagious, which it is not. This stigma often causes families to stay silent or avoid seeking timely treatment, fearing discrimination in schools, workplaces, or even marriage prospects,” he said, adding that talking openly, seeking help, and building awareness is the only way to overcome these fears.
“The more we normalise the conversation around haemophilia, the stronger and more supported these families will feel,” he said.
In Goa, there are around 70 registered patients with haemophilia A and B, including both children and adults. Of these, around 20 come from neighbouring areas —border villages and districts — who seek treatment at Goa Medical College (GMC) and occasionally also go to Ratnagiri or Mumbai, depending on the availability of services.
World Haemophilia Day is celebrated every year on April 17 to raise awareness about haemophilia and other bleeding disorders. The theme this year is ‘Access for All: Women and Girls Bleed Too’.
“Haemophilia is often misunderstood as a condition that affects only males. While it’s true that males are more frequently diagnosed, women and girls can be carriers, and many of them experience symptomatic bleeding as well. These symptoms can include heavy and prolonged menstruation, frequent nosebleeds, easy bruising, and postpartum haemorrhage, which are often ignored or misdiagnosed,” said Dr Nevrekar, adding that the theme is a call to action to recognise, diagnose, and treat bleeding disorders in women and girls.
“It also aims to empower women to speak openly about their symptoms and to ensure they receive equal access to medical care, testing, and support. We need to educate both the medical community and the general public that women bleed too – and their bleeding matters,” he said.
Dr Nevrekar said that one of the biggest challenges that haemophilia patients face is access to timely and consistent treatment.
“Although GMC provides factor therapy, stockouts or delays can happen. Patients from rural or border areas have to travel long distances, sometimes during bleeding episodes, which can be life-threatening. There’s also a lack of awareness among general practitioners and community health workers, which leads to misdiagnosis or delayed diagnosis. Strengthening primary healthcare, providing education, and building local support systems are crucial to overcoming these hurdles,” he said.
The Goa government, through GMC and under the National Health Mission (NHM), provides free clotting factor therapy, which is a huge relief for many families.
“GMC has a dedicated haemophilia treatment centre at ward 144 for adult patients and at the paediatrics ward for children, in addition to a dedicated physiotherapy department which provides physiotherapy to develop muscles and maintain joint function. Admissions and treatment are provided free of cost for all haemophilia patients,” said Dr Nevrekar.
He said that there are haemophilia chapters and support groups working in coordination with medical teams to raise awareness and guide patients. “However, we still need to work on training more healthcare providers, ensuring uninterrupted supply of factor concentrates, and introducing newer treatment options under public health schemes to provide better outcomes,” he said.
