【Love Help Charity Trust Activity Series】
On August 22, the Love Help Charity Trust held the “[Chapters of Life] SMA Patients and Care Sharing Session”, inviting SMA patient Chloe (pseudonym) and clinical hygiene teachers to share real stories and professional experiences, leading colleagues into the life world of SMA patients and their families, and understanding their mental journey in facing the disease and care.
Patient Chloe: A life journey to the world
Chloe was diagnosed with spinal muscular atrophy (SMA) at a young age and faced barrier-free environmental restrictions in kindergarten, facing numerous challenges. She began receiving medication in 2023, and with the support of her family and friends, she continued to face life with a positive attitude and gradually embarked on her dream journey.
However, going abroad was a big challenge for her, she researched all the information, spent half a year communicating with her family, from how to eliminate her family’s worries to finally getting support, and challenged self-guided travel in an electric wheelchair.
During her travels, she felt that Europe generally adopts the concept of “universal design of cities”, which takes into account different needs and combines cultural atmospheres to create a diverse and friendly environment. In Paris, she experienced unprecedented freedom.
Professional care perspective: In caring in love, companionship is the deepest support
SMA is a rare hereditary neuromuscular disease, and PSP health teachers pointed out that when there are SMA patients in the family, caregivers often suffer long-term psychological and financial pressure, but through patient subsidy resources, caregivers can help reduce their burden, and the physical and mental balance between patients and caregivers can also be achieved.
PSP health teachers also shared with you the social resources of actual referral to other patients, and assisted the patient’s family in supporting and integrating them, including:
- Long-term care services: home rehabilitation, transportation, respite services, environmental improvement
- Assistive devices for the disabled: electric wheelchairs, breathing equipment, etc
- Home Dental Services: Basic dental care such as scaling and fillings to reduce the burden on people with mobility impairments
- Electricity subsidies: For families who need to use medical equipment, help reduce the pressure on electricity bills
Through these policies and market resources, patients and their families can receive more financial, family and psychological support, and PSP health teachers can truly improve the living conditions of caregivers and patients through resource inventory and integrated assistance according to the patient’s condition.
Listen attentively and keep acting
This sharing session not only provided SMA knowledge and resources but also touched the heart, prompting colleagues to think about how to practice more understanding and support in their daily practices. When understanding the needs of patients, you should not use your own ideas to decide for the other person, but listen attentively: “What do you need?” Instead of “what do I think you need”. Respect patients as independent individuals, not just patients or those in need of care.
Since its establishment in 2017, the Love Help Charitable Trust has continued to assist patients with cancer, rare diseases, and major injuries and illnesses to overcome difficulties. We believe that every listening and communication is an important stroke in writing a chapter in life!
