My dear friend,

If you have found your way to this page, then you are probably either someone living with Wilson disease, or someone who loves a person who is. I want to begin by saying — welcome. You are not alone here. This whole site is for you.

I want to tell you, as plainly as I can, why this place exists, who built it, and what it is trying to be. Pull up a chair. Let me tell you the long version, because I think the long version is the one that matters.

The twelve-year shadow

I was born in a small city in central China. I was twelve years old the first time my body sent me to the hospital — acute glomerulonephritis, seven days of treatment, then home.

But before I left, the doctors found something else.

A routine ultrasound caught a faint, diffuse signature across my liver. My liver enzymes were elevated for no reason anyone could explain. I was screened for hepatitis A, B, C, E. I was screened for autoimmune liver disease. Every result came back negative.

The doctors had no answer. They told me to come back for routine follow-ups, and I did, year after year — the unexplained liver damage trailing me through middle school like a quiet shadow no one else could see.

The wrong answer

I was eighteen when my body raised its voice.

That year was gaokao — the Chinese college-entrance exam, the year that decides everything for a generation of students. I studied. I did not have time to be sick. But for twelve months, I did not have a single menstrual period.

The week after the exam, my parents took me to a major teaching hospital. I was admitted for two weeks. They tested every system. They biopsied my skin. At the end, they handed me a diagnosis written in four characters: systemic scleroderma.

I started corticosteroids. A year later, my liver enzymes had not changed and my periods had not returned. Under my parents’ worried gaze, I quietly stopped the medication. I tried exercise. My family then connected me to a respected traditional Chinese medicine doctor in Beijing. He could not name my disease either, but the herbs he prescribed brought my menstrual cycle back after about two months.

I told myself the long battle with my body was over. I told myself I was simply unusual and would live with it.

I was wrong. The real answer was still six years away.

A name, at last

I was twenty-four. I was about to leave for graduate school in the United States when a family member connected us to a specialist in Beijing.

I went, half out of duty, half out of one last hope. I sat down across from a doctor who listened to twelve years of my story without interrupting. When I finished he was quiet for a few seconds, then said:

Go and have your ceruloplasmin and serum copper tested. Do a 24-hour urine copper. And add a genetic test.

A few days later the results came back. The disease that had been following me since I was twelve had a name: Wilson disease — a rare disorder caused by mutations in the ATP7B gene that breaks the body’s ability to clear copper. The mystery liver damage. The misdiagnosed scleroderma. The lost menstrual year. All of it traced back to one broken protein, in every cell of my body, since the day I was born.

I should have felt relieved. Instead, I broke down.

China was, at that moment, in the middle of a national shortage of D-penicillamine, one of the two cornerstone drugs for Wilson disease. Wilson is rare. So few patients exist that the only domestic Chinese manufacturer had been losing money on the drug for years and had nearly stopped production. The week I learned my disease’s name, I learned there was no medication to treat it. I switched to zinc therapy as a stopgap. Patient organizations across the country lobbied loudly. The drug eventually came back into production at a higher price. Most patients with rare diseases never get even that small mercy.

For weeks after the diagnosis I would close the bathroom door, turn the shower on, and cry under the water so my parents would not hear.

But under that water, one decision became absolutely clear: I was not going to let this stop me from going to graduate school.

The decision in the shower

That fall I arrived in Baltimore.

At Johns Hopkins I studied not only marketing, but also Health Care Management. The two seemed unrelated to my classmates. To me they were one curriculum. Marketing taught me how to find a need that the world had not yet met and to articulate it clearly. Health care management taught me how the system surrounding that need actually worked — or, more often, failed to work.

The catalyst for choosing this combination was, plainly, my own disease. After twelve years of being the patient nobody could read, I no longer trusted any single perspective on medicine. Not the hospital’s. Not the doctor’s. Not even my own. I needed to see the entire system from the outside.

I did not yet know what I would build. But I knew I would build something.

Three lenses on a broken system

After Hopkins I returned to China and went to work, deliberately, in three different parts of the medical system in three years. I wanted to see it from every angle before I tried to change anything.

Lens one — inside a hospital

My first job was as a hospital administrator at a large teaching hospital in China known for its emphasis on humanistic care, supervising emergency, inpatient, and the ICU. This was as close to clinical reality as a non-clinician gets.

What I saw, every day, was the last mile of medicine. By the time patients reached the wards, they were almost always already in the late stage of their disease. Our medical systems are brilliant at rescue. They are terrible at early management.

So many chronic conditions — diabetes, cardiovascular disease, liver disease, kidney disease — could have been identified, intervened upon, and quietly managed in the years before they put a person in the ICU. But the system makes almost no room for that work. Doctors do not have the time. Insurance does not pay for it. Patients do not have the information.

That single observation later shaped everything I would build.

Lens two — inside a healthcare cooperative

My next role was at an international not-for-profit healthcare cooperative — one of those organizations that began, more than a century ago, as a friendly society of members pooling their resources so that no single member would face illness alone. You can think of it as the prototype of what we now call non-profit insurance. From this seat I learned a way of seeing that clinicians almost never have: a sharper sense of risk.

People in this kind of organization spend every working hour quantifying the probability that a person will, over the next five, ten, or thirty years, encounter a major medical event — and then designing how the community will share that load. That training rewires how you see ordinary life. The choices a person makes every day — what they eat, when they sleep, whether they show up for a checkup — stop being “lifestyle” and start being invisible promises the person is either keeping or breaking with each meal.

I carried that risk lens out of that office and into the rest of my life. And I extended it to a wider population: the burden of chronic disease in any society is the sum of millions of small daily decisions, compounded. A food product that quietly substitutes a healthier choice for a worse one is not just a snack. It is a small daily promise being kept.

Lens three — inside the industry that builds the tools

My third role took me into the medical device and digital-health industry. From there I learned a third discipline: how to do scientific research-and-development that actually meets the market.

Medical device R&D is unforgiving. Every design decision must be traceable, verifiable, reproducible. Every feature must answer a single brutal question: did this actually solve a clinical problem? And then it must serve the market — because a beautifully designed device that physicians refuse to prescribe, patients cannot afford, or systems will not reimburse is, in the end, only a piece of expensive sculpture.

These two disciplines — the rigor of science and the discipline of the market — became the dual rails for everything I would design after.

A fourth lens — my own body

The disease itself, of course, had been the first lens all along.

Twelve years of unexplained symptoms. Six years of active misdiagnosis. One correct answer that came too late to spare me the journey but just in time to spare the rest of my life.

By the time I arrived in Canada, the four lenses had quietly converged.

Why this site exists

In Canada I founded a company; the product is still in research and development, and what we are working toward is a way to bring medicine, AI, and the Internet of Things together so that people living with rare disease can have an affordable, sustainable, lifelong plan rather than a one-time treatment. But this site — livingwithwilson.org — is not the company. It is something separate, and to me, more personal.

Living with Wilson is a public-good project. I built it together with a small health-science team and a circle of volunteers. Everything we publish here is evidence-based — pulled from peer-reviewed literature, clinical guidelines from groups like AASLD and EASL, and the lived experience of patients and families generous enough to share their stories. Our work is to translate that evidence into language that ordinary people can understand and benefit from.

This site, and this project, will always be free.

We built this site because we want one thing for every Wilson patient in the world:

to live a long life,
to live a healthy life,
to live a life with dignity,
to keep the disease from progressing,
and to stay with their family for as long as possible.

That is all. Everything we publish is paywall-free. No tracking pixels. Just the resource I wish someone had handed me on the day I was diagnosed — and the resource I want every newly-diagnosed twelve-year-old, eighteen-year-old, twenty-four-year-old to find on their first night of searching the internet.

A word about my family

There is one more thing I want to say, and it is the most important thing in this whole letter.

The reason I have been able to live well with this disease is my family. The reason I do this work is my family.

My parents took me from one hospital to the next for twelve years before anyone could name what I had. A cousin finally placed the call that led to my diagnosis.

And then there is my husband. He never once shrank from the fact that I have a rare disease — I told him from the moment we met. Drawing on his medical background and over a thousand hours quietly poring over the literature, he designed for me a way of living: a daily plan for food, supplements, copper monitoring, and small habits. That plan pulled me out of a long stretch of constant subcutaneous bleeding, and over the months that followed it dramatically reversed the damage that had accumulated in my liver. He has been my second pair of clinical eyes, my advocate, my co-author. Every steady year I have lived since my diagnosis has him in it.

The siblings, partners, parents, and children of every Wilson patient I have met since are the same kind of person — every one of them is the quiet engine behind the patient’s adherence, the patient’s appointment-keeping, the patient’s grocery-list-of-low-copper-foods, the patient’s refusing-the-cake at the birthday party.

No one survives a chronic disease alone. Family is the largest single factor in adherence. Period.

If you are reading this and you are a Wilson patient: please share this site with the family member who has been carrying you. They have been doing the invisible work for years; they deserve the same evidence-based information you do.

If you are reading this and you are the family member: please share this site with the patient you love. There is space for you here too — because you are not just a caregiver, you are a co-survivor.

We hope this site becomes a small place on the internet where Wilson patients and their families can keep showing up, year after year, and find — together — a longer, healthier, more dignified life.

We will keep working. We hope you will too.

With care, and from one patient to another —

Wendy April 2026 · Toronto · for everyone