Pains among persons with albinism in Malaysia: A call for immediate interventions

Abstract

Being part of Malaysia’s human resource persons with albinism (PWA) deserve attention. They are visually
impaired, craning their neck and bending their body in order to read and perform other tasks that leads to pain.
Pains are associated with school functioning deficiencies, including school attendance, social functioning, and
academic performance. This preliminary investigation identified the persons with albinism’s pain status in
Malaysia. Twenty persons with oculocutenous albinism (OCA) with 20/200 visual acuity, aged between 17 to 65
years were assisted to answer a Standarised Nordic questionnaire for the analysis of musculoskeletal symptoms.
Structured interview sessions based on Health Related Quality of Life Short Form (HRQL SF8), were also
conducted at the office of Kuala Lumpur and Selangor Albinism Association and the Exercise Physiology
Laboratory of UPSI. All (100%) the respondents experienced pain for the past 12 months, 95% claimed severe
shoulder and neck pains, and 90% for the upper and lower back caused by wrong or awkward posture. Among those
surveyed, 95% claimed to experience head and thorax pains, and 100% in the abdomen area. Photophobia was
prevalent and hindered their daily activities. Despite experiencing severe pains, their quality of life was little
affected. Due to the high pain prevalence, there is an urgent need for health promotion programmes to increase
awareness on how to reduce pain. Pain management should include correcting their posture or by gadgets utilization.
Subsequently, the current research team includes working on automated-raised reading table to ease PWAs to
perform activities that require visual sense.

Keywords: albinism, HRQL SF8, musculoskeletal, pain, persons with albinism (PWA), Standard Nordic
questionnaire