“I have a disease, but the disease is not my entirety.” Ho Nam-keung, a patient with ankylosing spondylitis, was diagnosed at the age of 18 and has undergone surgery. He still needs to regularly visit the Wales Hospital for follow-up. Although his condition has worsened since the age of 18 and he is no longer able to stand for long periods, it doesn’t hinder his active nature. Regardless of the weather, Ken insists on swimming three to four times a week, half an hour each time.
There was a time when Ken’s emotions hit rock bottom, especially when those around him couldn’t understand his feelings. In 1995, during a doctor’s lecture, Ken was introduced to the Community Rehabilitation Network for the first time. He realized that his understanding of this disease was very limited, so he attended a self-management course. Later, he met like-minded peers in the course and, encouraged by social workers, formed the B27 Association. Ken serves as the Vice Chairman of Internal Affairs within the association, primarily responsible for coordinating internal work and daily operations, as well as organizing social gatherings to facilitate member sharing and communication.
When one reaches a dead end, there is always a way out. Having learned how to manage his illness, Ken knows the reasons behind the pain and can avoid it as much as possible. “As long as I don’t trigger it, it doesn’t bother me. We coexist peacefully. Although there will be times when we feel overwhelmed, it is alright, we are all humans after all. We experience positive and negative moments. I know it’s hard to change from negative to positive on my own, so I rely on interacting with others. Be it being encouraged or encouraging others, I feel less alone.”
In the blink of an eye, Ken has been with the B27 Association for 27 years. He jokes that half of his life has been dedicated to this association. Looking back, Ken initially established the self-help organization with a group of ambitious fellow patients in order to spread positive energy and promote self-help and mutual assistance among ankylosing spondylitis patients. “We can only rely on doctors for medication, but patients’ inner strength can be reinforced through the collaboration between our self-help organization and the Community Rehabilitation Network, enabling them to have more resilience in this long journey. That’s the purpose of self-help organizations and CRN.”
Ken not only helps in the association but also participates in CRN. He has witnessed our development from two centers to the current six centers across Hong Kong, Kowloon, and the New Territories. He describes CRN as a sieve, accumulating years of experience and understanding a sustainable and effective operational model, so that patients like him do not have to wander aimlessly in the vast sea or take unnecessary detours. Having received help himself, he also hopes to become a beacon of light for others.