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Sabah Hemophilia Education Workshop

26/Dec/2014

Sabah Hemophilia Education Workshop  

Exciting new activities have been planned and fruitful discussions between fellow treaters and people affected with hemophilia were conducted in Sabah’s first Hemophilia Education Workshop, held in Grand Borneo Hotel from 26 to 28thof December 2014. The 3-day workshop was participated by patients, families, physiotherapists, nurses and medical doctors from all over Sabah. This workshop, sponsored by Kimanis Power Sdn. Bhd., was aimed at bringing hemophilia community in Sabah together and strengthen their relationship with the medical personnels in effort to improve hemophilia care in the state. The workshop was officiated by Kimanis Power CEO, Mr Ali Hashim on the first day.The workshop schedule was filled with many educational sessions. On the first day, sharing sessions from parent’s and patient’s perspectives were held. Puan Zaiwiyah, sister to three hemophilia brothers and a mother to two hemophilia sons, led the parental session and shared her tips, experiences and feelings in taking care of hemophilia family members. On the patient’s side, two patients, Hazri Aris and Zulhilmi Ismadi, shared their challenges in growing up. The sessions were able to motivate and raise the spirit among hemophiliacs and showed that successes can be achieved despite being absence during school time. Furthermore, the session highlighted the importance of education among patients.

On the second day, a consultant hematologist from Ampang Hospital, Dr Jameela Sathar, gave a talk about hemophilia and how to manage it. Other than factor concentrate treatment, it is important for patients to exercise and eat balanced diet to ensure the patients have strong muscles and ideal weight, thus reducing the risk of injuries. Then, a practical session was conducted for parents and patients to learn self-infusion, a necessary skill for hemophilia family member in emergency situation. After lunch break, the participants were divided into three groups – fathers, mothers and the rest. Each group was given time to identify, discuss and present their challenges they had faced in the past. With the guidance from Mr Aris Hashim, a former National Member Organisation (NMO) vice president of World Federation of Hemophilia, the participants had elected a committee, which will lead and be the forefront team to address the challenges in Sabah.

The participants were trained with strengthening and stretching workouts to build up muscle strength and improve joint mobility by physiotherapists, led by Miss Lily Kwong. The day was concluded with brief talks on factor concentrate storage and introduction to Hemophilia Society of Malaysia.

A discussion between the participants and hematologists from Queen Elizabeth Hospital, Dr Lily Wong and Dr Chiam, was held on the final day. The meeting discussed the factor concentrate supply issue, self-infusion training and measures to improve hemophilia care in Sabah. Before the workshop ended, the feedbacks from the participants were reviewed. Based on the feedback, the participants would like to have more educational sessions from nutritionist and dentist, on top of including hydrotherapy session. The workshop was concluded after lunch. The event was an incredible success as a first step to many more future activities to come. 

 
 
 
 
 
 
 
 

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