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Friday, 19 August 2011

HEMOPHILIA

2

Treated hemophilia blood disease rare illness, but little hemophilia`s people community with their parents or their families, caregivers and physicians remain active through the Haemophilia Society of Malaysia (PHM) to reach out, inform and enlighten the public on the existence and danger of this disease.
PHM has also participated in two previous Camp Asia-Pacific Haemophilia and this year, Taiwan's turn to host the program organized in collaboration with pharmaceutical companies, Bayer HealthCare Asia Pacific and the Haemophilia Society of Taiwan.
The third time this camp together more than 100 participants from China, Indonesia, Malaysia, New Zealand, Taiwan and Thailand with the theme of 'Enjoy the best of life - hemophilia or not' take place from 15 to 18 July at the Uni-Resort Mawudu, Taiwan. Assembly saw the patient, caregivers and medical professionals from various countries to share while enriching the knowledge and information through a variety of fun activities. This year, 40 children and young people with hemophilia aged 7 to 17 years selected to attend this camp. Representing the PHM is a representative with a doctor and five patients, Lam Weng Hong, 13; Nabil Firdaus Mohd Nazri, 11; Mohd Hazim Qayyum Hishamullah , 13; Haron Mohd Ali, 7, and Kevin Vun Kai Hee, 11, together with their mothers who were flown Bayer HealthCare Asia Pacific with a media entourage. Cipto Mangunkusumo Hospital Consultant Paediatrician, Indonesia, Dr. Chozie Novie Amelia, the third time attending the camp respect, said he was proud of the positive development of hemophilia patients has matured and is able to manage themselves well. "Above all, they have the opportunity to meet peers from other countries and enrich yourself with the right attitude to face life challenges," he said, also one of the speakers at a workshop to discuss the angle of the widespread and hemophilia care in Indonesia and Malaysia. Participants are not only trained dare throw the ideas and give feedback through various workshops, and even taught a balanced diet, exercise, hydrotherapy water itself as well as injecting drugs in home using portable kits hemophilia. Parent patients might join a dialogue and a special forum aims to enrich their skills as caregivers, thus preparing the child to manage themselves independently and correctly. Dr. Novie through his paper, managed to share the facts about the wide spread of rates hemophilia in Indonesia, which currently has 1,200 registered patients. Three-quarters of children have the disease do not have access to proper treatment for a healthy and prosperous life. In fact, he said, the number of people with Haemophilia A in the republic was five times greater than for Haemophilia B. "To date a refund only for patient health care government employees registered with the Health Insurance Scheme Indonesia (Askes) or poor patients through Community Health Guarantee. This is because governments do not have enough funds to purchase the product to cover the cost of prophylactic treatment. "Therefore, in Indonesia we focus therapy on request. However, perhaps the end of this year, another factor IX product for the treatment of Haemophilia B is available in the Indonesian market.

INFO:

.Blood disease as a result of a lifetime with little or no blood clotting factor
.Usually inherited, affecting male.
.May also suffer through genetic mutation.
.An estimated 1.100 people registered with the National Blood Centre (PDN).
.PDN is recognized center of excellence in the management of hemophilia countries provide free treatment and medicines.

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