Bait-ul-Mal wins the hearts of Haemophilia patients

[Naveed Yaseen]

Announces support for 100 patients; presents cheques to 35

Monday, October 12, 2009
Shahina Maqbool

Islamabad

Like numerous occasions in the past, Pakistan Bait-ul-Mal (PBM) once again lived up to the expectations of the sick and needy - this time, children suffering from Haemophilia - by announcing support for the treatment of 100 patients registered with Pakistan Haemophilia Patients Welfare Society (PHPWS), and by awarding cheques of Rs30,000 each to 35 patients suffering from the bleeding disorder.

The gesture was warmly welcomed at a ceremony, organised by PHPWS here Saturday in connection with the launching of the National Haemophilia Educational Project (HEP) PK-III at a cost of approximately Rs3 million. The project has PBM, Islamabad Medical & Dental College (IMDC) and Novo Nordisk Haemophilia Foundation (NNHF) - an organisation dedicated to improving Haemophilia care in developing countries - as its collaborating partners.

Addressing the gathering as the chief guest, Chairman PBM Zamurrud Khan pledged his fullest cooperation to PHPWS in providing treatment and care to patients suffering from Haemophilia. In addition to announcing complete support for 100 patients registered with PHPWS, he gave cheques of Rs30,000 each to all 35 patients of Haemophilia, present at the ceremony.

“Pakistan Bait-ul-Mal will work in partnership with PHPWS to create an enabling environment for patients and their families. We will provide office space to PHPWS at PBM Park for disabled children. My staff will work with patients in the said office to remove any hurdles they may be facing in getting financial help,” Zamurrud Khan promised. He said he would soon hold a meeting with all senior health officials from the federal capital and provinces to mobilise support for the project. In response to a question by a Karachi-based representative of PHPWS, Zamurrud Khan said the support provided to patients in Islamabad would also be delivered to patients located in other provinces.

The ceremony had Dr Niazi, Chairman IMDC, and Dr Laiq Ahmed, Representative NNHF, as the guests of honour. Haemophilia patients and their families, doctors and paramedics from various hospitals from all over the country, representatives of all provincial chapters of PHPWS, and officials from governmental and non-governmental organisations attended the event.

Delivering her welcome address, Dr Tahira Zafar, Project Director HEP, presented a brief overview of HEP PK-II. She termed lack of knowledge and information about Haemophilia as exacerbating the challenges pertaining to the management of this disorder. “Through HEP (PK-II), we created awareness about the fact that the disorder can be appropriately managed through the combined efforts of patients and medical teams. The project paved the way for the development of educational materials to promote better understanding of haemophilia. Meetings, seminars and workshops for patient education were convened, so that in addition to being educated, patients can acquire the basic skills required to manage excessive bleeding outside the hospital,” she stated.

Dr Tahira said the patients of Haemophilia face a lot of difficulties in pursuing their professional careers due to lack of technical skills. To overcome this challenge, PHPWS is planning to start a vocational training programme to provide necessary education regarding different exercises for strengthening of muscles and joints in Haemophilia and to equip patients with computer skills so they are able to compete in the job market. “In order to achieve these goals, we need the support of different governmental organisations, so that Haemophilia patients can lead normal lives,” she said.

Dr Laiq Ahmad congratulated PHPWS for their excellent performance and promised to support the national project. He said NNHF is committed to looking after Haemophilia patients worldwide.

Yasmin Ehsan, the project facilitator, introduced the project strategy of HEP PK-III to the participants, saying that the project would be focused on educating and training patients and their families as well as doctors and paramedical staff. She informed that the booklets developed in the initial phase of the project would now be translated into Pushto, Sindhi and Balochi and disseminated throughout the country with the help of various chapters of PHPWS. Yasmin said the educational workshops would be conducted alongside the development of training modules and videos, which would guide doctors and paramedics in conducting awareness seminars.

Dr Niazi, too, appreciated the work done by PHPWS and offered IMDC’s facilities for conducting awareness workshops and diagnostic tests. Students of IMDC also volunteered to work with PHPWS.

Colour was added to the ceremony through the presentation of a national song by a group of Haemophilia patients, who later walked across the hall with placards and banners highlighting their problems at home, schools and hospitals. They requested officials from various governmental organisations to support the project.

In the end, Saif ul Islam, President PHPWS Islamabad Chapter, presented the vote of thanks. Shields were presented to the chief guest and the guests of honour, and certificates to the patients.

Haemophilia is an inherited bleeding disorder, which results in permanent disability if treated inadequately. People with Haemophilia do not bleed any faster than normal, but they can bleed for a longer time, their blood does not have enough clotting factor - a protein in the blood that controls bleeding. Haemophilia is quite rare and about one in 10,000 people are born with it.

Of the many marvellous faculties provided by nature, one is the arrest of bleeding once it happens. Unfortunately, there is a group of people, who are genetically deprived of this benefit. These people are not only unable to arrest bleeding but also have an enormous burden of ‘spontaneous’ bleeds in different organs and tissues of the body, where they occur without any trauma, cause or reason. All these lead to lifelong morbidities and many a time, to mortality.

Lack of knowledge about the disease and massive illiteracy, particularly in the rural populace and among females, are challenges impeding proper home- and self-based care; this highlights the value of a national awareness programme.

http://www.thenews.com.pk/daily_detail.asp?id=202843