Haemophilia awareness conference held

30 Nov, 2008

Health experts have urged haemophilia patients to consult a doctor who has experience of treating the disorder advised to stay active and exercise regularly. An awareness workshop on Joint and Muscle Issues and Healthy Lifestyle in Haemophilia, organised by Pakistan Haemophilia Welfare Society (PHWS) in collaboration with Novo Nordisk Haemophilia Foundation (NNHF), College of Physicians and Surgeons Pakistan (CPSP) discussed this on Saturday.
The Executive Director, Pakistan Institute of Medical Sciences (Pims), Dr Abdul Majid Rajput was the chief guest on the occasion while senior doctors from various hospitals of the twin cities of Islamabad and Rawalpindi and Haemophilia patients and their families attended the moot.
Dr Rajput said that education and awareness could play an important role in treating any disease. Haemophilia is a very uncommon disease and is unknown to most of the people. Haemophilia Education Project run by Haemophilia Centre Pims, Pakistan Haemophilia Patients Welfare Society (PHPWS) is the first ever project in Pakistan and aims to provide knowledge to patients with Haemophilia about their disease. Awareness workshop on was last of the series of six workshops planned under the HEP.
Earlier this year, the HEP has held workshops on Haemophilia, The Disease, Importance of Physiotherapy in Haemophilia, Gum and Dental Issues in Haemophilia, Women with Bleeding Disorders and Psychosocial Issues of the patients of Haemophilia and their families and provided knowledge on each aspect of the disease in detail.
These workshops aimed at providing basic but crucial information on haemophilia and doable home care skills. The HEP is focused on awareness raising and improved preventive care to reinforce the care offered by the medical doctors. The strategy includes developing effective simple to understand educational materials in local language, transfer of skills to patients and families for day-to-day home care and managing the emergencies among the patients.
Later, in the technical session, patients were given booklets printed in Urdu on Joint and Muscle Issues and Healthy lifestyle in haemophilia. Participants were also given knowledge on how bleeding in joints and muscles can limit their mobility and make them disables. They were also told the importance of exercises, which strengthen their joints and muscles and prevent bleeding. Some easy ways to handle bleeding into joints and muscles were also shown to the patients by giving them practical demonstrations.
Dr Khalid Aslam in his presentation talked about the muscle problems, which the haemophilia patients face. He told the patients about the affect bleeding has on their muscles and how can it limit their mobility. Further, Aslam recommended different exercises that can help strengthen muscles and prevent bleeding. He stressed on the importance of exercises saying that haemophilia patients should do regular exercises in order to keep themselves healthy.
The Country Representative, NNHF, Rami Sharaf in his presentation said that the aim of NNHF was to provide adequate care and treatment to haemophilia patients. He said that NNHF was established to serve haemophilia patients in developing countries and focus on capacity building and awareness rising.
The Executive Director, Pims, while addressing the participants said that these workshops play an important role in improving patient's knowledge about their disease. He appreciated the efforts made by the PHPWS team said that this project should be made a national project in order to create awareness about haemophilia in other parts of the country as well.

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