pLOG

2025-09-03

“**It’s the Environment, Not the Individual**” – SMA Patients and Professional Caregivers Sharing Session

【Ai Bang Mang Charity Trust Event Series】

The Ai Bang Mang Charity Trust successfully concluded the “**Composing the Chapters of Life: SMA Patients and Caregivers Sharing Session**” on August 22. The event featured SMA patient Chloe (pseudonym) and a clinical health educator, who shared authentic stories and professional insights, guiding colleagues into the daily lives of SMA patients and their families and fostering understanding of their emotional journeys in facing the disease and caregiving challenges.

Patient Chloe: A Courageous Journey into the World

 Chloe was diagnosed with spinal muscular atrophy (SMA) from a young age and faced numerous challenges, including accessibility limitations during her kindergarten years. Since beginning medication treatment in 2023, with the support of her family and friends, she has maintained a positive attitude and gradually pursued her dreams. Traveling abroad, however, presented a major challenge. After six months of research and discussions with her family—addressing their concerns and ultimately gaining their support—she embarked on a self-guided journey using her electric wheelchair.

Chloe visited the UK, France, Switzerland, Italy, the Netherlands, Denmark, and Iceland. During her travels, she experienced Europe’s widespread adoption of the “universal design” concept in urban planning, creating environments that accommodate diverse needs while blending cultural elements to foster inclusivity. In Paris, she felt an unprecedented sense of freedom, highlighting the impact of thoughtful, accessible design on everyday life.

Professional Care Perspective: Caring with Love – Companionship as the Deepest Support

SMA is a rare genetic neuromuscular disease. According to PSP health educators, caregivers of SMA patients often face long-term psychological and financial pressures. However, patient assistance resources can help alleviate these burdens, enabling both patients and caregivers to achieve greater physical and mental balance.

At the event, PSP health educators also shared practical examples of referring patients to social resources and assisting families in integrating support, including:

  • Long-Term Care Services:Home rehabilitation, transportation services, respite care, and environmental modifications
  • Assistive Device Subsidies:Electric wheelchairs, respiratory equipment, and more
  • In-Home Dental Services:Basic dental care such as teeth cleaning and fillings, helping to reduce the burden for those with mobility challenges
  • Electricity Subsidies:Assistance for families using medical equipment to help reduce electricity costs

Through these policies and available market resources, patients and their families can receive greater financial, household, and psychological support. PSP health educators help by assessing patient-specific resources and integrating daily living needs, truly improving the quality of life for both caregivers and patients. With this balanced support, patients are better able to adhere to complete treatment plans, ultimately enhancing their physical and mental well-being.

Listen with Care, Act with Commitment

This sharing session not only provided knowledge and resources about SMA but also offered a heartfelt experience, encouraging colleagues to reflect on how to show greater understanding and support in daily practice. When understanding patients’ needs, one should avoid imposing personal assumptions and instead listen attentively: “What do you need?” rather than “What I think you need.” It emphasizes respecting patients as independent individuals, not merely as patients or recipients of care.

Since its establishment in 2017, the Ai Bang Mang Charity Trust has continuously supported patients with cancer, rare diseases, and major illnesses in overcoming challenges. We believe that every act of listening and engagement is an important stroke in composing the chapters of life!