01 — CO-DESIGNING NECK SUPPORT WITH AN FSHD PATIENT
FSHD: facioscapulohumeral muscular dystrophy
FSHD:面肩肱型肌营养不良症
Zhang, Z., Yang, Y., Liu, J., Shen, D., Parati, I. Co-Designing Interactive Inflatable Head Supports with People Living with FSHD: Needs, Prototypes, and Design Implications. HCI International – UAHCI (under review).
In what ways do existing neck supports fail people living with FSHD?
现有的颈部支撑,在哪些方面无法满足 FSHD 患者的需求?
FSHD is a hereditary, progressive muscle disease in which neck weakness and pain are common — and often uneven between the left and right sides. Most commercial collars are designed to immobilise the neck after trauma. Together with a person living with FSHD, we co-designed an inflatable head support made of TPU film: airbags shaped from a scan of her head and neck conform to the jaw and neck, while a stack of airbags beside the jaw inflates or deflates to assist head rotation.
FSHD 是一种遗传性、进行性的肌肉疾病,颈部无力和疼痛很常见,而且左右两侧往往不对称。市面上大多数颈托是为创伤后固定颈椎而设计的。我们与一位 FSHD 患者共同设计了一款由 TPU 薄膜制成的充气头部支撑:气囊根据她头颈部的扫描数据成型,充气后贴合下颌与颈部;下颌一侧的叠层气囊可以充气或放气,辅助头部转动。
RoleFramed the research logic and led its inflation simulation, TPU prototyping and structural testing.
角色构建研究框架与逻辑,并主导充气仿真、TPU 原型制作与充气结构测试。




