Gulinigaer
a patient with Homozygous Familial Hypercholesterolemia (HoFH) and Patient Ambassador of FH China Patient Network
Gulinigaer shared her story titled "From Kuche to Beijing: Solving the Mystery Written on My Skin Over Twenty Years." As she recounted her journey toward diagnosis and the challenges she faced along the way, many fellow patients with similar experiences were reminded of their own difficult paths to medical care, creating a deep sense of resonance.
Over the past two decades, Gulinigaer has never stopped moving forward—from her determination to leave Xinjiang, to seeking treatment in the capital city, and finally participating in a cutting-edge clinical trial in December 2024. She has now passed the double-blind phase and is currently receiving treatment. She firmly believes that advances in medicine will ultimately conquer HoFH, and that every patient can achieve a healthy life!
Zhaozhao Song
a patient with Homozygous Familial Hypercholesterolemia (HoFH) and Patient Ambassador of FH China Patient Network
Zhaozhao Song shared his story under the theme "Cholesterol That Won't Fall, But a Spirit That Won't Be Broken," showcasing the courage and determination of FH patients living with their condition.He first introduced his journey from the discovery of xanthomas to trying various treatment methods. At the age of 28, a coronary CT scan revealed a 60% blockage in his right coronary artery, and his doctor recommended stent placement. Through relentless effort, he sought out new therapies and enrolled in a clinical trial. Although the first trial had limited effectiveness, this did not dampen Zhaozhao’s resolve to keep moving forward.
Currently, Zhaozhao is awaiting his second gene therapy. He believes that although rare diseases are uncommon, love and science are never absent. Cholesterol may be hard to lower, but it will never break our spirit.
Yu-Jiao Chen
Ambassador of FH China Patient Network, with Heterozygous Familial Hypercholesterolemia (HeFH)
Yu-Jiao Chen shared her story under the theme "The Emotional Journey of a Young Female HeFH Patient," recounting her diagnostic and treatment experience. She spoke about her personal transformation—from struggling to accept lifelong medication to developing healthy disease management habits. She also addressed common concerns among female patients regarding fertility, allowing many young patients in the audience to see reflections of their own experiences and creating a strong sense of resonance.
Chen emphasized that current advances in third-generation in vitro fertilization (IVF) technology offer new options for families wishing to have children. At the same time, she noted that parents’ experience in managing their own condition can help their children better manage FH, and that parents need not feel excessive anxiety or guilt.
