Faltering Steps, a Sunlit Heart: Documenting an HoFH Patient's Quest for New Medication

Setting Off

At the break of dawn on October 11, 2026, the team from Hongmili Mutual Aid House flew from Xi'an, Shaanxi to Nanjing, Jiangsu with their interview equipment. Their mission was to visually document a long-time HoFH (Homozygous Familial Hypercholesterolemia) patient friend they have known for years, specifically recording his journey of seeking medical care, being hospitalized, and receiving a new medication.

Reunion

When we met him on a street in Nanjing, he was walking slowly towards a hotel on a slight incline. After walking just a short distance, he had to pause to catch his breath. Although his voice remained resonant and his spirit as enthusiastic as ever, pulling his suitcase easily exhausted him and triggered symptoms of angina. Despite these challenges, he remains incredibly resilient—persistently seeking medical help and embracing life with a positive attitude.

His Medical Condition

He currently has 6 stents and suffers from severe aortic valve stenosis and diffuse systemic vascular stenosis; his vascular condition is extremely poor. He had hoped to undergo cardiac surgery to relieve his physical discomfort. However, due to the severity of his vascular condition, surgery is currently not possible. The immediate priority is to control and lower his blood lipids first, and then determine a treatment plan based on his condition.

Focus of This Documentary

This video recording primarily captures his entire journey from Nanjing to Shanghai for medical treatment. The team accompanied him throughout the process, assisting with hospital admission procedures and helping to ensure he could smoothly access the new medication. We eagerly anticipate a significant reduction in his lipid levels after using the new drug, and we sincerely hope his condition will improve in the future.

From left to right: Photographer Sun Yibo, patient friend "Da Chengzi", Chen Lu (Hongmili), and Wang Yani (Hongmili).