The Hemophilia Society of Malaysia (HSM) held the ‘CREATING AWARENESS AND EMPOWERING WOMEN & GIRLS WITH INHERITED BLEEDING DISORDERS’ webinar to build awareness of inherited bleeding disorders and empower the female community that suffers from them. Joining in to support this movement was Dr. Kuldip Kaur A/P Prem Singh, Director of Sungai Buloh Hospital, along with other local medical experts to maximize the impact of this campaign.
Most bleeding disorders are inherited and passed down through genetics and affecting the clotting of blood that results in excessive bleeding both inside and outside the body. The inability to form blood clots can be dangerous, and they lead to easy bruising, frequent nosebleeds, heavy menstrual bleeding, and excessive bleeding from minor cuts. Hemophilia and Von Willebrand disease (VWD) are the most common inherited bleeding disorders.
Girls that have inherited these disorders face some complications when they come of age and start menstruating. These women experience menorrhagia during their menstruation, causing them to bleed excessively for more than seven days. Though every individual is different, to give a rough understanding of the volume of blood lost during their menstruation period – women with these disorders would typically bleed the equivalent of what a regular person would in seven days, during their first and second day.
Edwin Goh, President of the Hemophilia Society of Malaysia (HSM), said, “Bleeding disorders has been male-centric due to the predominance of haemophilia in men. Because of this, the troubles and voices of the minority female population are disregarded. We need to work collectively to embrace these women, and show them they are accepted in our society, and that there is nothing to be ashamed about.”
At the press conference, Mdm. Kim Chew, Hemophilia A Carrier, Von Willebrand Disease (VWD) patient and Pn. Norhana Hussain, Hemophilia B Carrier Factor 9 Deficiency Patient, expressed that it is especially difficult for younger girls that are just beginning to get their period as they often find blood leaking through their clothes. Embarrassed and traumatized from this, most of them usually lock themselves up at home to avoid any contact with people. The trauma and routine is carried on towards their adult lives.
Hence, the ‘CREATING AWARENESS AND EMPOWERING WOMEN & GIRLS WITH INHERITED BLEEDING DISORDERS’ campaign was established to encourage the female population with inherited bleeding diseases to accept their condition openly, and keep the public well informed so that they do not be too quick to criticize or judge when encountering such situations.
Dr. Kuldip Kaur A/P Prem Singh, Director of Sungai Buloh Hospital, said, “As we move forward, I believe it is important for people to be well informed on the subject of bleeding disorders, so that women who have inherited it need not feel ashamed of their condition; with campaigns such as this, we can change what is considered taboo to be normal.”
Sponsors – McMillan Woods Global, Novo Nordisk, TDOX Clinic, and Onecare Wellness were quick to jump in this movement and be an exemplary role model as they stand alongside women with bleeding disorders.
The webinar was hosted by Dr. Choo Mei Sze, Youth Ambassador of the National Cancer Society of Malaysia. Local medical experts that supported the virtual event and gave empowering key note sessions include:
- Women’s Group Advisor – Dr. Jameela Sathar, Senior Consultant Hematologist at Ampang Hospital
- Dr. Veena Selvaratnam, Hematologist at Ampang Hospital
- Dr. Lavitha Sivapatham, Obstetrician & Gynaecologist at Ampang Hospital
- Pn. Suzanah Abd Hamid, Psychology Officer at Sabah Women & Children Hospital Kota Kinabalu, Sabah