The School of Medical Science (SoMS), University of Hyderabad (UoH), organized an Awareness Webinar on The Royal Disease – Hemophilia, on April 22, 2021, on the occasion of “The World Hemophilia Day” which is celebrated every year on April 17th.

Three invited speakers were shared their experience form three different perspectives like clinical perspective, societal perspective, and as individual perspective as sufferer of Haemophilia, Dr. Ramana Dundamudi, MRCPI, D.CH. He is a renowned Senior Paediatric Haematologist and Oncologist, working with children and persons with bleeding disorders like Hemophilia and Thalessemia. Currently he works in his own hospital at Punjagutta, Little Stars Children Hospital and has around 35 years of expertise in his field. He talked on the topic “What should we be knowing about Hemophilia”. His opening remarks were “Public Medicine is as good as Hospital Medicine” and in reference to rare bleeding disorders he said, “the policymakers and decision-makers should realize the importance of Public Medicine for coping with these diseases and much more stronger policies should be implemented so that people with such disorders could live on a par with normal people.” He went on to explain in detail about the clinical aspects of hemophila, how factor therapy is the mainstay of treatment and the consequences of Hemophilia and factor therapy.

The second speaker was Mr. Vasudeva Rao. He has a vast experience of more than 12 years working with Persons with Hemophilia in the community side. Currently, he is the Secretary for the Hemophilia Society, Yadadri Chapter. He talked about “The Role of Hemophilia Societies”. His opening remarks were “Hemophilia is no more a Royal Disease but has even spread to the general public”. He went on to explain the difficulties that Persons with Hemophilia (PWH) and their families face in terms of procuring factors for their treatment, need and frequency of hospitalizations and their social and personal sufferings. He gave many examples of patients and their sufferings and how Hemophilia Societies should and are helping these PWH. The third speaker was Mr. Srinivas. He is a PhD scholar in Mathematics at Osmania University and is a sufferer of Hemophilia. He talked on the topic “Understanding and Managing Bleeds – A Sufferer’s Perspective”. In his opening remarks he explained how thankful he was that such a platform was arranged to voice out the sufferings of People with Hemophilia. He shared his personal life experiences and experiences of his fellow Hemophilics in his presentation. He also mentioned that awareness about the condition among the medical fraternity is lacking and that is indirectly contributing to the delay in treatment and increasing of their suffering.

All the three speakers stressed on the importance of creating awareness of such bleeding disorders, not only in the public but also to the health professionals in the urban and especially in the rural areas. All of them talked about the importance of Physiotherapy and how it helps in improving the Quality of life of the PWH. They added that Health Policies should be developed for such disorders so that the sufferings of PWH can be reduced, empowering, and encouraging them to find a purpose in life.

The Webinar began with an introduction by Dr. Ajitha Katta, Associate Professor, SoMS and Prof. Prakash Babu, Dean, SoMS gave the welcome address.

The webinar ended with questions and answers regarding the topic.

Contributed by Dr. Ajitha Katta (Associate Professor) and Dr. Uday Raj Devaraju J (PhD Scholar), School of Medical Sciences.