As many as 400 patients are currently registered at the Haemophilia Centre of the Pakistan Institute of Medical Sciences (PIMS), which provided treatment to 1,500 patients and registered 58 new patients suffering from the bleeding disorder in 2007.
This piece of information was shared by Dr Tahira Zafar of the Haemophilia Centre while addressing a ceremony organized at the MCH Centre here on Saturday to launch the haemophilia education programme. The ceremony was attended by haemophilia patients, doctors, members of the provincial chapter of the Pakistan Haemophilia Patient Welfare Society (PHPWS), which has collaborated in the project, government officials from Pakistan Bait-ul-Mal, the Social Welfare Department, the Ministry of Health, the Pakistan Medical Research Council and representatives of local and international NGOs.
The executive director of PIMS, Dr Abdul Majeed Rajput, who was the chief guest on the occasion, said the hospital will provide all possible facilities for the treatment of patients suffering from haemophilia. Already, the Centre offer surgical, orthopaedic, dental and physiotherapy services to patients requiring these.
He congratulated the staff of Haemophilia Centre, PHPWS president and representative of Novo Nordesik Haemophilia Foundation (NNHF)
for providing excellent services to patients.
Rami Sharaf, who represented NNHF, said the Foundation is committed to improving Haemophilia care in developing countries and is collaborating with the Islamabad chapter of PHPWS to improve overall care of patients.
The education project, which has been conceived by Haemophilia Centre and PHPWS, will pave the way for development of educational material in the local languages to promote better understanding of haemophilia. The project’s primary focus will be on education, awareness and promotion of proper care of hemophilic patients through improved knowledge and information dissemination. The core components of the strategy include baseline survey, material development and seminars.
“The education project is not restricted to patients coming for treatment at PIMS. All patients throughout the country will benefit by learning more about the management of the disease,” assistant director OPD Dr Wasim Khawaja told this correspondent.
Earlier, Dr Tahira Zafar, consultant hematologist and in-charge of the Haemophilia Centre highlighted the causes, symptoms, prevention and treatment of the disorder.
Hemophilia is an inherited bleeding disorder, which results in permanent disability if treated inadequately. People with hemophilia do not bleed any faster than normal, but they can bleed for a longer time. Their blood does not have enough clotting factor. Clotting factor is a protein in blood that controls bleeding. Hemophilia is quite rare. About 1 in 10,000 people are born with it. For treatment, the missing clotting factor is injected into the bloodstream using a needle. Bleeding stops when enough clotting factor reaches the spot that is bleeding.
The most common type of hemophilia is called hemophilia A. This means that the person does not have enough clotting factor VIII (8). A less common type is called hemophilia B. this person does not have enough clotting factor IX (9). The signs of haemophilia A and B are big bruises; bleeding into muscles and joints, especially the knees, elbows, and ankles; spontaneous bleeding (sudden bleeding inside the body for no clear reason); bleeding for a long time after getting a cut, removing a tooth, or having surgery; and bleeding for a long time after an accident, especially after an injury to the head.
Lack of knowledge about the disease and massive illiteracy, particularly in the rural populace and among females, are the challenges impeding proper home- and self-based care. “Educational materials for understanding of the disease and care of the patient are urgently required to expedite the awareness process at various levels, Dr. Tahira told ‘The News.’ She said, awareness is important so that disabilities can be avoided and patients are able lead normal lives.
Some time hemophilia can occur when there is no family history of it. This is called sporadic hemophilia. About 30% of people with hemophilia did not get it through their parent’s genes. It was caused by change in the person’s own genes. When the father has hemophilia but the mother does not, none of the sons will have haemophilia but all of the daughters will carry the hemophilia genes.
Women who have the hemophilia gene are called carriers. They some times show signs of hemophilia, and they can pass it on to their children. For each child, there is a 50% chance that a son will have hemophilia and a 50% chance that a daughter will carry the gene. Women can only have hemophilia if their father has hemophilia and their mother is a carrier. This is very uncommon.
The presidents of Peshawar, Rawalpindi, Islamabad and Lahore chapters of PHPWS also spoke on the occasion and gave an account of the activities and services being provided by their centres. Project facilitator Yasmin Ehsan detailed the strategy while project coordinator Shah Faisal gave details of the workplan.
The ceremony ended with a resolve by the patients to remain totally committed to being involved in all activities being planned for them to improve haemophilia care in the country.
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