WFH NETWORK

Chew “Kim” Yin: mother, VWD patient and carrier finds balance

Chew “Kim” Yin understands balance and how difficult it can be to maintain in life if you do not have family and a community there to support you. That balance and support is especially important for the caregiver of someone with a bleeding disorder. The impact on mental health that comes with being a caregiver for a family member living with a chronic disease often plays out behind closed doors. When Kim’s son Adryon was diagnosed with severe Hemophilia A before his first birthday in 2001, both she and her husband were hit with feelings of guilt and anxiety. For Kim though, the pain ran deeper as she had not shared with her husband her family’s history with bleeding disorders. Right from the beginning however, the community was there to support her and her family. Her son’s hematologist, Faraizah binti Dato’ Abdul Karim, MD, gently provided initial counselling for the family and introduced them to the WFH Treatment Guidelines. At that point they were also introduced to the Hemophilia Society of Malaysia (HSM) where they were able to find support from community members who had lived through the same experience. Thanks to this support, the family felt the weight of despair lifting.

Chew “Kim” Yin

“I strongly believe that once we accept that we are not alone, all the anxiety, fears, guilt and stress wash away. Nothing is impossible unless we run away.”

Today, Adryon is well on his way to completing his first year of college. He is an avid swimmer who enjoys music. Kim is a successful Senior Business Development Executive in the field of logistics and the family is happy. Unfortunately, the road was not all smooth, as Kim grappled with depression and the stress of being a primary caregiver to a young boy throughout Adryon’s early childhood.

With the help of her family and community she found herself at a point, when her son turned six, where she was ready to give back to the bleeding disorder community. She chose to join the HSM volunteer committee and continues serving her community to this day. Even as she found balance, life, however, placed another challenge in front of her when she was diagnosed with von Willebrand’s disease (VWD) at the age of thirty-five. Her condition is manageable, but the treatment regimen produces side effects which can be challenging.

Kim readily admits that being a mother with VWD and caring for a child with a bleeding disorder is a huge challenge. Sometimes, she finds that daily responsibility tiring. But even at her lowest point, she finds a quiet balance, knowing that tough days will always be followed by days filled with the love and joy she receives from her family and her community.

The World Federation of Hemophilia (WFH) believes that patients and their families should have support regardless of where they live. It is the reason we launched a free WFH Global Community Membership Program (GCMP) membership level, so that no matter where you are, you can read about inspiring stories from your community. Not a member? Join today.

Want to know more? Contact the WFH at globalcommunity@wfh.org with any questions, comments or suggestions.

Not a member yet? Join today!

Free GCMP Membership: open to all, free for all

Do the stories of the bleeding disorders community inspire you? Do you want to stay informed about the WFH’s latest news and upcoming events? The benefits of a free GCMP Membership include access to news about the global community through your own profile page.

This free, inclusive membership is the point of entry to the global community. Your participation will increase the number of people supporting the WFH in pursuit of its vision of Treatment for All. Click here to get your free membership today.

Professional GCMP Membership

Are you professionally interested in the bleeding disorders community? Do you have a deep desire to increase your knowledge through accessing the latest developments in hemophilia care? Benefits include online access to Haemophilia, the official WFH journal and access to networking opportunities during upcoming WFH meetings and events starting in 2019.

The US$150 fee helps support WFH initiatives around the world. Click here to join the growing number of healthcare professionals who have chosen to become GCMP members.