Patient Stories | 28 Years Old, 6 Heart Stents: My Life-and-Death Battle with a Rare Disease
“I am Wang Xin, and everyone can also call me Shizi.This year I am 28 years old, and this is my 25th year fighting against a rare disease — Homozygous Familial Hypercholesterolemia (HoFH).From anxi...
HoFH Patient Story | From “Being 'Harvested'” to Gene Therapy: It Took Me 37 Years
“My name is Shanshan, I am 38 years old, and I am a...homozygoteFamilial hypercholesterolemia(HoFH) patients。From a worldly perspective, my life has been quite bumpy.I've had xanthoma since I was e...
HoFH Patient Stories | At 27, with three blocked vessels, I never knew what “illness” I had?
Xiao Yang is a HoFH patient from the Red Rice Mutual Aid Community. His experience reflects the common dilemmas faced by rare disease patients: early signs being misread, a lack of standardized diagno
Patient Stories | Five Years After Open-Heart Bypass Surgery, My Blood Vessels Narrowed Again
“Maintaining a calm and optimistic mindset is just as important as treatment.It's even more important than treatment.”I was told my cholesterol was high during a routine check-up in the village in ...
Patient Stories | Forty Years of Illness, Two Heart Surgeries, Before I Knew I Was a Rare Disease Pa
“ When I learned that I had a rare diseaseI am 40 years old.”I am a homozygous familial hypercholesterolemia patient, and it wasn't until 2024 that I learned the heart problem that had plagued me f...
Born Extraordinary: Cholesterol Seven Times Over the Limit, Truth Revealed Only 25 Years Later
Original • Rare Diseases • Heartwarming Science PopularizationThe 66 ExpectChina's first batch of rare disease catalogs:46Xiao Lin, who lives in JiangsuFrom birth, yellowish growths began to appea...
My Eight-Year Journey of Exploration as Someone with Elevated Lipoprotein(a) (Lp(a)): I Tried Every
My name is Yunfei, and I'm 35 years old. With a background in science and engineering, I have a natural sensitivity to numbers and a strong interest in health and nutrition. I once read a nutrition bo
2026-08-27
to the end ~
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