MUMBAI: To mark the occasion of World Hemophilia Day (April 17, 2013), Hemophilia Society, Mumbai Chapter organized a patient awareness camp and discussion session for the patients on Hemophilia and its management.
The hemophilic patients were given training and exercises under the esteemed guidance and supervision of Dr. Jayashri Kale, Professor and Head Occupational Therapy. Over 400 people attended the awareness camp held at KEM Hospital, Mumbai.
This patient awareness activity organized by the Hemophilia Society, Mumbai Chapter aimed to raise awareness about the Hemophilia disease, its diagnosis and available treatments providing them total care through continuous education, training and rehabilitation.
This was followed by the inauguration of the first wellness centre for the hemophiliac patients at KEM Hospital by Dr. Ankita Kar & Dr. Supriya Mahabaleshwar from the Interdisciplinary school of Health Science, Pune University. Of the existing 11,200 haemophiliacs in Maharashtra, only 2,500 exist on the registry of the State Blood Council. Discussions and deliberation held at the awareness camp enumerated there is a need for more awareness about the hemophilia disease.
Lack of awareness about this genetic disorder leads to several complications among patients, not just in rural areas but in cities as well. Despite the efforts have been made by the state government in making the availability of replacement therapy of deficient coagulation factor (VIII or IX or Inhibitors) to the patients most patients do not have the money to buy factors. The major challenge for these chapters is treating poor as most of the patients are from poorest of poor background and more than 80% of patients suffering from Hemophilia are undiagnosed.
This awareness camp made a fervent appeal to the government to take notice of the hemophilia patients who are in dire need and require support.
It urged to set up more day care centres with proper infrastructure and facilities to mitigate the sufferings of this lot. Furthermore under the Rajiv Gandhi Jeevadayi Arogya Yojana, the scheme brought into effect by the state government since July last year covers over 900 diseases, with Hemophilia being one the key diseases demanded the availability of free diagnosis, free treatment and free medicines to hemophilia patients.
The current data in the region shows that there is need setting up better infrastructure and day care centers that will offer proper care and rehabilitation to these patients. Indira Nair, president of Hemophilia Society, Mumbai Chapter said, "Not only we want to raise the awareness about the Hemophilia disease among physicians and the public, but also to provide patients who suffer from Hemophilia a total care. We are thankful to the government for making the availability of factor VIII and IX concentrates as the safest treatment option for patients with hemophilia. We are hopeful that the government will continue to support with the availability of free treatment to patients with hemophilia at all the government hospitals. Improving Infrastructure and establishing hemophilia treatment centre's can be one step to ensure these patients get the best care. The next step would be a creating more awareness about the disease and providing comprehensive psycho-social care mechanism for the PWH in the state."
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