My Eight-Year Journey of Exploration as Someone with Elevated Lipoprotein(a) (Lp(a)): I Tried Every
About eight years ago, around 2017 or 2018, I had just graduated and started working. I switched from riding a bicycle to an electric scooter, which changed my lifestyle, and my weight and body fat percentage gradually increased. During that time, I always felt extremely tired, experienced heart palpitations frequently, and couldn't even stand still on the subway. I felt something was wrong, so I went to a third-party medical examination agency and bought a comprehensive package to get a thorough checkup of my body.
The day my medical report came out, I was stunned. Several of my blood lipid-related indicators were negative:My low-density lipoprotein cholesterol (LDL-C) was 3.83 mmol/L, my triglycerides were also high, and there was another indicator I had never seen before—lipoprotein (a)—which had a value of more than 1700 mg/L.I know what this number means; it's far beyond the normal range.homocysteineMy blood pressure was also high, around 23. I looked it up and found that these indicators are all related to cardiovascular disease. Considering my recent heart palpitations and fatigue, I became very scared.
Inspection figures for 2017
From that day on, I embarked on a near-mad journey of self-salvation.
⌈UnmovedLp(a)⌋
I first desperately tried to lose weight. Within a month, I ate only one banana or one apple each night and ran five kilometers every day, losing nearly ten kilograms. Then, full of hope, I went for a follow-up checkup. My triglycerides had indeed decreased, but my low-density lipoprotein (LDL-C) was still around 3.78 mmol/L.Lipoprotein (a) remained unchanged, fluctuating between 1600 mg/L and 1700 mg/L.
At that moment, my spirits plummeted. I realized that no matter how hard I tried to diet and exercise, this thing was like a nail stuck in my body, and I simply couldn't get rid of it.
I continued my research and learned that elevated lipoprotein(a) is mainly determined by genes and has little to do with lifestyle. I started buying all sorts of nutrition books and researching supplements: vitamin D, vitamin K, folic acid, fish oil… I tried almost everything I could find that might be beneficial to my cardiovascular health. I even bought…statinsI'm taking atorvastatin, rosuvastatin, and pitavastatin in rotation, hoping to lower my blood lipids.
However, reality repeatedly poured cold water on my hopes.
I found that taking statins not only didn't help my lipoprotein (a), but sometimes it actually made it rise even higher, from 1200 mg/L to 1800 mg/L. I went to see doctors at several top-tier hospitals and got appointments with specialists, but the answers were almost all the same: "This indicator is related to genes, and there is currently no specific drug. You don't need to pay too much attention to it; just control your low-density lipoprotein (LDL-C)."
I know doctors are very busy; they deal with patients who already have cardiovascular and cerebrovascular diseases. A young person like me, without symptoms, might not seem to require "overtreatment" in their eyes. But I just feel that with a potential risk present, how can I ignore it?
During that time, I felt like someone chosen by God, carrying a "time bomb" that no one else could see. Looking at the people coming and going on the street, I felt they were all so healthy, while I alone bore this unknown fear. I even went to...Carotid ultrasoundI had a cardiac ultrasound to check for plaque buildup. The results were all good, and the doctor said, "You're so young, there's nothing to worry about." But I was still concerned, so I had my femoral artery checked, afraid there might be a hidden problem in a more concealed area.
Later, I came across the concepts of "low-carb diets," "ketogenic diets," and even "all-carb diets," believing that reducing carbohydrates could reduce inflammation in the body, thereby lowering cardiovascular risk. I was very strict with myself at one point, but in the long run, such an extreme diet is difficult to maintain. I slowly started to return to a balanced diet, but I paid more attention to the quality of ingredients than most people, tried to avoid takeout, controlled the amount of rice, and used good quality cooking oil.
I began to understand that the lipoprotein (a) problem cannot be solved by one or two "magic pills" or a certain extreme diet.It's more like a systemic project that requires me to optimize my lifestyle as a whole, reduce my body's inflammation levels, and manage other controllable risk factors (such as cholesterol, blood pressure, and blood sugar) to offset the potential negative effects of lipoprotein(a).
⌈In the process of helping others:
lay downpowerlessness,getSense of meaning⌋
I set my LDL-C target below 4.0 mmol/L. If I felt tired or unwell, I would take some medication temporarily. More often, I regulated it through diet, supplements, and regular exercise. I spent several years in this cycle of trying, failing, and trying again. The doctor's "don't worry about it" felt more like a helpless comfort to me than a reassuring answer. Until I accidentally found "Red Rice Grain Mutual Aid Home" online.
At first I thought they only focused onFamilial hypercholesterolemiaPeople might not necessarily care about lipoprotein(a), a more "niche" issue. But after tentatively adding each other on WeChat, I found myself in a "home." Here, there are professional popular science articles, the latest research progress, and more importantly, a group of people who, like me, are concerned about blood lipid health.
I joined the "Live Bravely" group, and later joined regional and disease-specific groups. I started sharing my experiences and answering questions from fellow patients. I discovered that many newly diagnosed people, especially young women and new mothers, are extremely anxious, and some even hold incorrect beliefs. I distilled my years of learning and exploration into a single sentence, a reminder, telling them not to panic, what they can do, and what pitfalls to avoid. Seven or eight people added me on private message, and after our conversations, they would say, "Oh, I see." At that moment, I felt my research hadn't been in vain; I could help others.
This feeling was completely different from the helplessness I felt groping alone in the dark before. It was like a beam of light, illuminating not only others but also myself.
Last year, when Hongmili recruited community administrators, I signed up without hesitation. I thought, since I have some ability and am willing to spend the time, why not step forward and do more for this community? Later, I participated in offline events organized by Hongmili, was invited to a patient day hosted by a multinational pharmaceutical company, and was also interviewed by The Paper's podcast.
At the Patient Day event, I met representatives from different rare disease groups and heard insights from experts from the National Health Commission and pharmaceutical company executives. It was then that I realized we are not alone; so many people and institutions are paying attention to rare diseases and working hard to promote new drug development and policy changes. In an interview with The Paper, I shared my journey over the past few years, why I am so focused on this indicator, what it has brought me, and why I am an advocate. The young journalists who interviewed me were deeply moved after hearing my story and said they would get checked out as well.I thought to myself, advocacy is useful, really useful.
⌈ WalkingAdvocatesOn the road⌋
Now, I have bigger goals.
Sister Nazhen told me that Red Rice Grain has joined the FH European Foundation and the Global Heart Alliance, and that we can spread the stories of Chinese patients to the world through European foundations. She asked me if I would like to become a patient ambassador, and I agreed without hesitation.
mineThe advocacy actually started with family members.During family gatherings, because I'm quite conscious of my diet, the conversation often turns to health. I tell them they absolutely must get their lipoprotein (A) levels checked, as most hospitals don't test this proactively, and they should also monitor other blood lipid levels. My cousin listened to me and got tested; the results showed his blood lipids were indeed high. Now he's diligently managing them, controlling his diet and taking statins, and the results are quite good. I think that since I have the opportunity and ability now, I shouldn't waste it.I want to not only help those around me, but also let more people see it, let more people know about it, so that this indicator can be included in routine examinations, so that its measurement unit can be standardized, and so that doctors can pay enough attention to it. I am also willing to write popular science articles, connect with research institutions, and contribute to promoting policy.
I know I can't change anything on my own. But Hongmili has given me a platform that allows me to contribute my small personal strength to the organization's actions. In the future, we want to try to encourage hospitals in Shanghai, and even more cities, to include lipoprotein(a) in routine testing, and to promote the standardization of this indicator across different units, so that more patients can know about it and manage it earlier.
To those who are still hesitant, fearful, and those who have already been diagnosed, I want to say: your awareness is always your greatest guarantee of health. Understand it correctly, learn about it thoroughly; strategically underestimate it, tactically take it seriously; actively cope with it. I believe that besides resolving the problem itself, you will gain many more different experiences and insights.
