HoFH Patient Story | From “Being 'Harvested'” to Gene Therapy: It Took Me 37 Years

^⌈The first one on the elbow"Millet Grain"，
That was my first encounter with this disease._⌋

I still remember when I was in second or third grade, the first thing that grew on my elbow appeared.

It was tiny, like a grain of rice, and didn't hurt or itch. My mom glanced at it and said it was probably just a small bump, nothing to worry about. I didn't pay any attention to it and continued going to school and playing, and that "grain of rice" just stayed quietly on my arm.

But it wasn't always that small.

A few months later, it began to grow. A year later, it was the size of an egg. Even stranger, the other elbow also began to grow, symmetrically and exactly the same on both sides.

Back then, we lived in the countryside, and nobody knew anything about these things. We just thought it was a lump that wasn't pretty. My mom took me to a small clinic in town, got some local anesthesia, and had a simple surgery to remove it. After that, we went home. Nobody suggested getting my blood lipids checked, and nobody asked why I had it.

I didn't know anything back then. I just cut it and thought that was the end of it.

^⌈"Harvesting leeks"On ordinary days:
Cut it long, then cut it again._⌋

But not long after, it grew back. It grew back in the same spot.

This time, it wasn't just my elbows; new bumps started appearing on my knees, ankles, and hips as well. They didn't hurt or itch; they just existed there, one after another, getting bigger and bigger.

I have a younger brother, four years younger than me. He had his growths earlier than I did, around six or seven years old, when they appeared on his buttocks. My mother took him to town to have them removed, just like me. But his growths were much faster; they appeared simultaneously on his elbows, knees, and ankles, densely packed together. During that time, my mother mainly focused on him—we siblings were in the same situation, but his growth was progressing much faster, so the family had to prioritize him.

The county hospital invited experts from Beijing to perform surgery on my brother. The yellow tumor had grown onto the tendon, so it wasn't a simple matter of removal. It was connected to the tendon, and the slightest mistake could damage it; the surgery had to be extremely meticulous. After the surgery, the removed tissue was sent to Beijing for pathological examination.

In 1998, I was ten years old. That was the first time I learned that these things on my body were called "xanthoma".

Doctors in Beijing suggested we check our blood lipids. The results showed my brother was 14 or 15, and I was in my early 20s. The doctor was surprised, saying he'd never seen such high numbers before. But that was all. Back then, no one told us what those numbers meant, no one said how dangerous it was, no one prescribed medication, and certainly no one said the condition could be fatal.

We only remember one thing: these yellow tumors are caused by high cholesterol.

Later, the county doctor advised us: "Stop cutting it. It's like cutting chives; the more you cut, the faster it grows, and the more you stimulate it to grow."

From then on, we only had surgery when it severely affected walking, wearing shoes, or significantly impacted appearance. My younger brother had more parts removed later, but I endured the pain until I went to university.

^⌈ I ammonsterOkay?_⌋

When I went to college, this was the first time I really cared about this.

It's not because of the pain, it's because of the beauty.

What girl in her early twenties doesn't love to look good? In the summer, when I wear short sleeves, I have two big lumps on my elbows; in public showers, everyone else is completely naked, while I have bumps and bulges all over my body. I don't dare turn around, so I always hide in a corner, hurry up and finish washing before leaving.

I was extremely insecure back then. Not just one.For the past two days, I've been feeling particularly down.I worry: Will people look down on me when I find a partner? Will this disease be passed on to my children? Am I some kind of monster?

The left arm shows scars left from multiple excisions.The right arm shows an untreated xanthoma. The photo was taken on February 27, 2026.

But this feeling only lasted a few days. I'm a pretty easygoing person. A few days of discomfort, and it's over.

When I feel down, I do other things. I study English, so I often go to a corner to read English, memorize texts, participate in speech contests, and take exams. Once I'm busy, I forget about my feelings.

Later I realized: what you care about is your own mindset. If you have a good mindset, nothing else matters.Even though it's so hot in the summer, I still wear short sleeves. When people ask me about it, I just laugh it off—it's nothing, just a little bump that will go away with some medicine.

That's how I made peace with myself.

^⌈At Ruijin Hospital in Shanghai:
The first time I heardDisease Name_⌋

After graduation, I went to work in Shanghai. Once I had the financial means, the first thing I did was go to Ruijin Hospital for treatment. This was the first time I had ever heard a formal name for a disease:Familial hypercholesterolemia。

The doctor asked about my family history. I told him that my maternal grandmother died of coronary heart disease and my paternal grandfather died of a cerebral hemorrhage.The doctor deduced that they were both carriers of the disease. My parents also carried the disease-causing gene. I inherited it from both my parents.

The doctor gave me a CT scan and found that my carotid artery was calcified. That was in 2013, when I was 25 years old.

He prescribed the medicine and called...IzhemabuIt was imported, and each pill cost ten yuan. At that time, my monthly salary was three or four thousand yuan, and my younger brother also needed to take it, so the monthly medicine cost was one or two thousand yuan. I persisted for a few months, but I really couldn't afford it anymore, so I gradually stopped taking it.

The doctor also said they would do a free genetic test for me, to keep some data. I did it, but I didn't pay much attention to it afterward and didn't follow up on the results. Maybe I changed my phone number later, because the hospital never notified me. That genetic test was just forgotten.

And so, I only solved half the mystery of xanthomas. I knew they were caused by high cholesterol and were hereditary, but I didn't know how serious they were or what would happen in the future.

For those few years, I really didn't take the illness too seriously. It didn't hurt or itch, and it didn't affect my life, so who would think about it every day?

^⌈The doctor I met

Even more than meconfused_⌋

In those years, we visited many hospitals.

Some doctors, upon seeing the bumps on my arm, treated them like they were something special, pinching and touching them. Some doctors said:"You're so young, how could your blood lipids be high? Just control your diet and it will be fine."Some doctors won't even order a carotid artery ultrasound; we have to beg them, saying, "Just order it for me, I'll pay for it myself."

Later, when I went to the hospital, I could tell whether a doctor knew anything or not just by opening their mouth. If they didn't, I didn't want to say anything more.

I've never blamed the doctors. This disease is so rare; there are fewer doctors than patients with rare diseases. It's normal that they haven't seen it before and don't understand it. I just feel lost—a loss because you know you have a disease, but you don't know who can cure it; when you go to the doctor, they are even more confused than you are.

After a while, you won't want to go anymore.

Later, I simply lay down. When people asked, I just smiled and said, "It's nothing, just a little bump. Anyway, it's on the outside, it doesn't affect my life. It'll just grow back if I cut it off, so I'll leave it."

I thought this was how my life would be.

^⌈A sentenceMy back hurts. ，          
It changed the fate of my family_⌋

In 2023, my brother was 31 years old and was on a business trip.Sudden heart attackAlright.

He was lucky; his colleague didn't wait for an ambulance and drove him directly to the hospital.A stent was placed in the emergency room, saving his life. Several months later, a second surgery was performed to open up another blood vessel.

My brother's xanthoma grew and developed rapidly from a young age, probably related to his smoking, drinking, and staying up late starting in his teens. I'm not surprised that he got sick. But what really sent chills down my spine was something my mother said.

I was seven or eight months pregnant at the time, staying at my parents' house. My mom was cooking for me when she suddenly said, "My back has been hurting for several days." She had previously complained of neck pain and had her grandson massage it for her. At the time, everyone in the family thought she was just tired from sitting for too long playing mahjong.

When my brother got into trouble, alarm bells suddenly went off in my head.

I was heavily pregnant, and I insisted on dragging my mom to the county hospital for a CTA scan. She was reluctant, saying she was perfectly healthy and didn't need to go for a checkup. I argued with her about it, and only then did she reluctantly go.

Before the results were even out, I gave her aspirin and cholesterol-lowering medication—I was terrified. When the results finally came out, the doctor was vague, only saying something like, "The situation is quite serious, and it's not very clear." I called to inquire that very night, and the final news I received was:Moderate to severe vascular stenosis.

My legs went weak at that moment.

I took my mom directly to the Municipal People's Hospital. My brother had just had his second stent procedure and hadn't been discharged yet when my mom was admitted to the same department.

After the angiography, the doctor came out and talked to me: her blood lipids were over ten percent, one blood vessel was completely blocked, but collateral circulation saved her life. Another blood vessel was 95% blocked, so two stents were placed. The third blood vessel was okay.

My mother's blood lipid test results before taking the medication.
Total cholesterol 11 mmol/L

My mom even argued with me, saying that my daughter was perfectly healthy and active, so why did she have to be hospitalized? I was speechless, just terrified—it was so close, so very close.。If this blood vessel hadn't been open, I might not have had a mother.

During the time I was heavily pregnant and running back and forth between home and the hospital, I truly realized for the first time that this disease could really kill people.

^⌈12This forever

The numbers won't come down_⌋

After my mother was discharged from the hospital, she started taking injections.IloromabTaking statins, ezetimibe, and aspirin directly lowered LDL-C to around 1.

My brother and I can't.

My brother's blood lipid level dropped as low as 5 or 6, but it averaged around 7. After I stopped breastfeeding, I started taking injections and medication, and after six months, my blood lipid level was still 12.

My low-density lipoprotein (LDL) level of 12 mmol/L is the lowest I've had since my twenties. It has never been below 12 in all these years.

My blood lipid test results from August 2025.
Low density 12.47 mmol/L

I asked the doctor what to do, but he didn't know either. Changing the statin and adjusting the dosage didn't help much.

At the time, I didn't know what homozygotes or heterozygotes were; I only knew that the needle would only be half effective on me.

But one thing made me feel quite relieved: after six months of injections, the yellow lumps on my body that hadn't been removed gradually shrank, some even fading to almost invisible. This gave me a glimmer of hope.

But what I didn't expect was that what truly gave me hope wasn't a needle or medicine, but a video.

^⌈Is it a scam?
This is the first time I've heard of Xi'an.Free clinic_⌋

In 2025, my brother came across a video on Douyin. A young man in a similar situation to him said he went to Xi'an, where a hospital was holding a free clinic and doctors were specializing in this disease.

My first thought was: Could this be a scam?

For so many years, no one has ever paid attention to our illness. We've been to so many hospitals, and not a single doctor could give us a clear diagnosis. Suddenly, someone says there's a free clinic, doctors, and a treatment plan—how can I believe that?

But then I thought: what could they possibly lie to us about? Our disease is rare to begin with, what could they possibly lie about?

While learning about the hospital online, I also learned about "Red Rice Grain" and saw the organization's official WeChat account.

As I scrolled down through the articles on their WeChat official account, I saw the stories of the initiators, the free clinics they had conducted, the popular science articles they had written, the doctors they had contacted, and the activities they had organized over the years. As I read on, my eyes welled up with tears.

That was the first time I realized that there were actually people who cared about our community. They weren't just talking; they were doing things one by one—finding people scattered all over the country, like me, who had never met anyone like them, and bringing them into the group one by one, so that everyone knew: you are not alone.

I stared at the screen for a long time. It's hard to describe the feeling. I told my parents: This isn't a scam, there really are people helping us.

In August 2025, my brother drove my parents, my son, and my nephew to Xi'an.

^⌈Thirty-seven years,
    AnswerFinally revealed_⌋

In Xi'an, we had our genetic tests done.

The day the results came out, I finally learned the full name of my disease: complex heterozygous familial hypercholesterolemia.

The doctor explained that both my father's and mother's genes for the disease are dominant traits, and they look different. However, despite the differences, they are both abnormal genes. Medically, this would be considered homozygous.

No wonder the injections were only half effective. No wonder my blood lipids wouldn't come down. No wonder my brother and I have had xanthoma since we were little.

After thirty-seven years, the mystery of this disease has finally been solved.

But at the same time, I'm more worried about my son. He's only a few years old, could he have inherited this disease?

The results showed he was heterozygous, and his blood lipids were only slightly elevated. My brother's child is also heterozygous, but his blood lipids are currently normal.

At that moment, I breathed a sigh of relief.

^⌈I dream about it

Medicationyounger brother_⌋

After returning from Xi'an, my brother seemed like a completely different person.

He knew there were gene therapy clinical trials here, so he asked about them every day and waited every day. He waited from August 2025 to October, from October to December, and from December to 2026. He was obsessed with it every day, saying, "Sister, I dream about using the drug. I dream about solving this problem."

He was terrified. Anyone who's had a stent implanted knows what that feels like.

To be honest, we definitely have concerns about clinical trials. But what we hope for more is that for so many years, no one has ever known about our disease, and no one has ever been able to help us. After arriving in Xi'an, we suddenly discovered a group of people—patient organizations, doctors—who have been paying attention to us and working tirelessly for us.

That feeling,It's like walking in the dark for too long, and suddenly someone pushes open the door, letting the light in.

At the beginning of this year, he finally started taking medication. His latest blood lipid report in February showed that his LDL cholesterol level had dropped to 0.83 mmol/L.The moment I saw this number, I was stunned—I had never seen anything like it in over thirty years.My brother has such low blood lipid levels.

I was happy for him, and secretly hoped that I could have the same success.In March of this year, I also participated in this clinical trial. The latest blood lipid test results in April showed that the effects of the medication were comparable to those of my younger brother. The light of hope has truly shone upon us!

^⌈from"Outer planet"          
Back to "Earth"_⌋

Looking back on these 37 years, if I had to name the biggest turning point, it wouldn't be my brother's heart attack or my mother's stent placement, but rather my arrival in Xi'an, where I learned about Hongmili and met the clinicians here.

Before, we lived in a place where no one knew about our illness, like living on an alien planet. After coming here, the nurses looked at us differently—it was the kind of look that said, "I know what's wrong with you, and I know how to help you."

I proudly told my friends, "Did you know that there are doctors in Xi'an who specialize in researching our disease, and there are even clinical trials? It was developed by our own country!" They were all very surprised, saying that medicine has advanced to this level.

Before, I was the one chasing after doctors asking questions; now, doctors are chasing after us to treat us. I don't know how to describe this feeling. It's like you've been walking alone in the dark for decades, and suddenly someone lights a lamp.

^⌈My life has not been smooth:

But I never had the slightest...Complain_⌋

My life has certainly not been smooth sailing. But I have no regrets and I don't complain. I've been cheated out of money, had my kindness taken advantage of, been treated like a peculiar spectacle, been overwhelmed by life's pressures, and even secretly written a will at night, but I've never blamed anyone.

Because I've found that when you have a good mindset, even God will help you.

See, haven't I been waiting for this day?

I'm 38 years old, and although I have high cholesterol, I haven't had any cardiovascular events like heart attacks. I think this is largely due to my mindset, healthy eating habits, and lifestyle—I almost never stay up late, rarely eat junk food, and consistently exercise.

So, based on my own experience, I want to say to everyone in the community: no matter what difficulties you encounter, you must face them positively. Mindset is really important, and maintaining healthy lifestyle habits is the foundation for lowering cholesterol.

When my son grows up, I will tell him that his blood lipids are slightly high, so he should pay attention to his diet and exercise. He should also get a genetic test when he looks for a partner, so that the next generation won't have to suffer from this.

And my relatives with high cholesterol, I advised them one by one to get checked and start taking medication as soon as possible, before waiting until they had a heart attack and needed stents to take it seriously. Some listened, some didn't. I didn't force those who didn't listen. All I could do was share my story so that more people could know.

Red Rice Grain Mutual Aid Home is our organization. Every activity and every plan it undertakes is to fight for our voice, for resources, and for our future.。Therefore, I will do my utmost whenever necessary.。My illness is rare. If sharing it can provide doctors with a reference and give fellow patients a little hope, then it's all worthwhile.

For thirty-seven years, I have not been crushed by fate.

And not in the future.