English translation
Dear Amy,
I don't know what day at sea this is for you.
Right now, is it the sunshine, the starry sky, or the pitch-black wind and waves that keep you company? What difficulties have you encountered these past few days? When the waves beat against the boat again and again, when weariness and loneliness set in, we hope this letter of ours can cross five thousand kilometers of sea and bring you a little strength, a little warmth.
We are a group of patients with Peutz-Jeghers syndrome (PJS). This is a hereditary, tumor-related rare disease. From childhood, the dark spots on our lips have been like a mark we can't shake off; in many places, it is misunderstood as a symbol of “bad luck.”
As we grow up, we have to face the continuously growing polyps in our small intestine, face the risk of intestinal obstruction and intussusception, and face one abdominal surgery after another. Even heavier is our far higher-than-average risk of cancer. Our long lives seem to be filled with endless examinations, re-examinations, and surgeries. What many people fear most is not the pain before their eyes, but not knowing on which day the diagnosis that reads “cancer” will arrive—the suffocating feeling of that moment is enough to completely engulf a person.
We have no specific drug, nor an anti-cancer vaccine that could eliminate fear with a single shot. Even if we remove the polyps today, in the future they may still grow back. Repeated abdominal surgeries are like installing a zipper on our bellies, the intestines cut segment after segment, and body and heart become extremely fragile amid this repeated wearing-down.
But we have never stopped declaring war on the disease.
Over more than twenty years, through the joint efforts of patient friends and doctors, we have built a nationwide patient network, contacted experts in various places, and set up green channels for medical care. More and more patients can find, at the first opportunity, the doctor nearest to them who best understands PJS; more and more people have avoided unnecessary suffering; more and more cancers are detected at an early stage, winning precious treatment opportunities.
And behind all of this is a person we will never forget—Sister Meijuan. On June 15, 2026, she ended her own life due to depression.
She was an ordinary patient. She had undergone 1 abdominal surgery and 2 bouts of breast cancer; countless enteroscopies left her 170-centimeter frame weighing less than 90 jin (about 45 kg). Even so, over 19 years she devoted all her private time to QQ groups and WeChat groups, helping more than 2,000 patient families. She set up more than 80 groups for hospitals across the country, organized materials, and shared experiences, never taking any payment. She shared without reservation the expert resources and medical experience she had accumulated over many years, patiently listening to and comforting every patient friend in difficulty. She said: “With a rare disease, the more people who know about it, the better.”
Regrettably, in the end she did not get to travel, sing, and learn English after retirement, to realize those ordinary and beautiful dreams. She helped so many patients and families, yet she herself was crushed by depression. She once said with a smile: “In 19 years of being a rare-disease patient, I gained more than 2,000 good friends.” Her companionship to patients made us understand: when we bravely say “I am a rare-disease patient,” countless voices will respond, “So am I”; when we say aloud “I need help,” countless voices will say, “I need help too, and I am willing to help you.”
Amy, when you row with all your might in the vast sea, it's as if we see ourselves. You are contending with the wind and waves; we are contending with the disease. Before you is an ocean whose end cannot be seen; before us is a lifelong anti-cancer road whose finish line cannot be seen. But precisely because of this, we understand all the more the meaning of perseverance.
If there is ever a moment when you feel weary and want to give up, please remember: on the other side of the earth, more than two thousand PJS patients and families are cheering you on. We believe that every stroke you row forward will let more people hear the voice of rare disease; every wave you cross will bring hope to more patients.
Amy, please row on our behalf the far journey that Sister Meijuan was unable to complete, toward the other end of the Atlantic; perhaps this is Heaven's arrangement—that her unfulfilled wish continues forward by way of your oars. And please tell the world for us: the rare is not alone. Breaking the waves with our oars, we move toward the light.
May you safely pass through the storm and reach the far shore.
From the China PJS (Peutz-Jeghers Syndrome) Care Center
With respect
— — —— — —
Appendix: The only self-introduction Sister Meijuan left behind
“You need to get to the hospital quickly.” After I sent the message, I froze at the sight of the red exclamation mark on the screen. My thoughts were instantly pulled back to 22 years ago. Looking back at the surgical report from that time, my heart still races—the intussusception was as long as 30 centimeters; fortunately the bowel had not become necrotic. If I hadn't had surgery in time back then, I might not have had the chance to share my story here. If a colleague had not mentioned the detail that “dark spots are related to abdominal pain,” I might never have known that the lip spots I'd had since childhood were, as cause and effect, linked to the hundreds of polyps quietly growing in my digestive tract.
That was 2002; I was 24, and the abdominal pain began. A colleague at work told me that stomach pain might be related to polyps in the belly, and also connected to the dark spots on my mouth. As a child, I had noticed dark spots on my lips and oral mucosa, but my belly had never hurt, so I had never thought there could be any connection between the two. At the time, I didn't take my colleague's words to heart; after all, the abdominal pain passed after a while, and with the New Year approaching, I didn't pay much attention.
After the New Year, the abdominal pain became more and more frequent, and I suddenly remembered my colleague's words, so I tried searching online with the keywords “dark spots, polyps,” and was startled to realize that I might have a rare disease called Peutz-Jeghers syndrome.
This disease is mainly characterized by mucocutaneous pigmentation and multiple gastrointestinal polyps. Its prevalence is extremely low, only 1/200,000 to 1/8,000. PJS has onset from childhood; as the patient ages, gastrointestinal polyps gradually increase in number and size, which can cause various complications such as intussusception, intestinal obstruction, gastrointestinal bleeding, canceration, malnutrition, and developmental delay in children. In addition, patients have a higher risk of gastrointestinal canceration, and may also develop tumors such as pancreatic cancer, lung cancer, and gastric-type adenocarcinoma of the cervix. For a long time, among adolescent and young-adult PJS patients, most, because of repeated complications such as intussusception and intestinal obstruction, have been forced to undergo surgical treatment many times.
At that time, my abdominal pain was becoming more and more frequent—from once every month or two at first, to daily abdominal pain later—and I had to go to the hospital. Removing the multiple polyps in the digestive tract and preventing and treating the various complications they cause is the most important clinical treatment goal for this disease. Polyps in the stomach, proximal duodenum, and colorectum of PJS patients can be removed by gastroscopy and colonoscopy. In the outpatient department, I had polyps removed under colonoscopy and gastroscopy, but after staying in the hospital for over a month, my belly still hurt. I guessed that this must be caused by polyps in my small intestine.
Because PJS polyps can be distributed throughout the entire gastrointestinal tract, with the common sites, in order, being the small intestine, colon, and stomach, and most commonly the proximal small intestine such as the duodenum and proximal jejunum. Another study has reported that about half of patients show distribution throughout the entire gastrointestinal tract (with polyps in the stomach, small intestine, and colorectum), with a relatively large number of polyps, the small intestine being the site where PJS polyps most frequently occur. The polyps are mainly pedunculated, somewhat like grapes, with a small portion being sessile or broad-based polyps.
When searching for the disease online, I found only one post left by a patient friend seeking a consultation, in which he had left his mobile phone number. With trepidation, I dialed this phone number thousands of miles away. The patient friend told me that small-intestine polyp removal needs to be done by opening the abdomen while using an enteroscope in coordination. Simply put, after opening the abdomen, a small incision is made in the intestine, the enteroscope goes in and searches up and down the entire small intestine, and the polyps are all removed in one go. But the vast majority of regional hospitals do not have this technology, and even now there are still many hospitals that do not have this technique.
At that time I was still young, working alone away from home, with a meager income, and I didn't want to burden my family, so I chose to take antispasmodic drugs prescribed by the local hospital. At first they were effective—after taking them my belly stopped hurting—but after a while they lost their effect. Then I went to the local hospital to get Chinese medicine to drink; this Chinese medicine could relieve my abdominal pain symptoms—as long as I drank it my belly wouldn't hurt, and on any day I didn't drink it, it would hurt. I kept this up for over a year, and I knew I couldn't keep dragging it out like this; I had to deal with the polyps in my small intestine.
The patient friend told me that Shanghai Changhai Hospital could do it, so on March 15, 2005, I boarded the bus to Shanghai. At night I lay on a small bed in the living room of a guesthouse next to the hospital, tightly clutching the twenty thousand yuan I had borrowed, and didn't sleep all night for fear of it being stolen.
This time, at Shanghai Changhai Hospital, I received all-round treatment from Director Meng Ronggui of the anorectal department. Using a method combining enteroscopy and open abdominal surgery, Director Meng dealt with all the polyps hidden in my small intestine. This surgery not only solved my immediate suffering; more importantly, it spared me the risk of intestinal obstruction and intussusception that I might face in the future as the polyps grew, and the pain of the repeated abdominal surgeries that would come with them.
I remember that on the day I was discharged, the sunshine was so warm and the air so sweet—life turned out to be so wonderful!
While hospitalized at the local hospital, I also learned an exciting piece of news: a balloon-assisted enteroscope (enteroscope for short) that can fully examine the entire small intestine had come into being. Upon learning this news, I immediately searched online and found that this enteroscope could not only examine but also had the function of removing polyps. The enteroscope can enter the intestine through the anus or the mouth; once inside, it can clearly reveal the shape, size, number, and distribution of the polyps, and after finding them the doctor can loop a snare around the neck of the polyp and remove it using pure electrocoagulation or a mixed coagulation-cutting mode. If it could really succeed, then we would never again have to open the abdomen once every two or three years!
With an excited heart, I shared this discovery with my patient friend. He began to inquire everywhere about which hospitals had this equipment, contacting top hospitals and doctors across the country in hopes of finding a medical institution that could provide this advanced treatment. However, we found that at the time almost all hospitals used the enteroscope only for diagnosis, and most hospitals had reservations about—or were even unwilling to attempt—using it for polyp-removal treatment.
In early 2005, enteroscope technology reached an important turning point. This patient friend got in touch with Director Mao Gaoping of the gastroenterology department of the former Beijing Air Force General Hospital (“Kongzong” for short, now the Beijing Air Force Medical Center). After searching far and wide among relevant manufacturers, Director Mao specially custom-made a thin and long snare to suit the special needs of polyp-removal surgery under the enteroscope. In February 2005, Director Mao and his team successfully completed the first enteroscopic polyp-removal surgery for PJS, thus opening a new chapter of enteroscopic polyp removal in China.
The baton was passed from Director Mao to his student Director Ning Shoubin (now the director of the gastroenterology department at Kongzong). Under Director Ning's leadership, the department not only inherited the unique advantages of enteroscope technology, but also kept overcoming difficulties in practice and further refined this technique. Over 20 years, Kongzong has received more than 760 PJS patients, becoming the world's largest center for the enteroscopic diagnosis and treatment of PJS. During the busiest periods, the hospital even had 25 patients undergoing enteroscopic treatment in a single day.
Director Mao Gaoping and Director Ning Shoubin
Just when everything was going smoothly with the enteroscope, and we thought we would be worry-free as long as we removed the polyps regularly, a new challenge appeared: clinical data in recent years show that the incidence of gastric-type adenocarcinoma of the cervix in female patients is dozens of times higher than in ordinary people. This lurking killer is often missed by routine screening. As our patient community kept expanding and exchanges increased, we found that many patient friends had developed gastric-type adenocarcinoma of the cervix, and almost all of them were already at the invasive stage when diagnosed. It was not until the end of 2021 that we realized the danger of this cancer to our community.
At the end of 2021, through Dr. Chen Yiwei of Wandou SIR, we got to know Director Kang Yu of the gynecologic oncology department of Shanghai Red House Hospital, and set up a dedicated gynecology group. Director Kang has provided many green channels for our community, and also established the PJS Shanghai Multidisciplinary Alliance. Over the past three years, we have kept recommending patient friends to see Director Kang; so far more than a hundred patient friends have undergone examinations, but there are still many patient friends who have not yet had a gynecological examination.
Many patient friends, after problems are detected, can undergo timely surgery for early intervention and treatment. Some patient friends found to have cysts, lobular hyperplasia, or atypical lobular hyperplasia of the cervix, having understood their own condition, can choose regular monitoring to prevent the condition from worsening. And several lucky patient friends were found to have gastric-type adenocarcinoma of the cervix while it was still at the carcinoma in situ stage and had timely surgery, thereby avoiding more serious consequences.
A colleague's kind reminder, the help of patient friends, and doctors' brave exploration were like a seed that sprouted in my heart; I wanted to pass on this spirit of mutual help.
On February 24, 2006, at the suggestion of a patient friend, Sister Li, we set up a QQ patient group. Over 19 years, the group has brought together at least 2,000 patient family lines. Whenever a new patient friend joins, I can't wait to tell them everything I know.
I am more anxious than they are themselves, because I know the consequences of not getting proper treatment—that is, repeated abdominal surgery or even malignant transformation. This sense of urgency caused me to lose my sense of proportion when popularizing knowledge of the disease, causing panic among patient friends. People said that the daily discussion of illness in the group was frightening to see. Many chose to mute the group's messages, and some even suspected I was a medical tout (“yituo”) with some ulterior motive.
In the past, I always worried that patient friends would take detours: worried they didn't understand the disease and would thus delay their condition, worried they didn't know the medical channels and would thus fail to get the best treatment, worried they didn't take it seriously, worried they would avoid it… Especially in actual work, whenever something that moved me happened—such as a patient friend's canceration or death—I would unconsciously cause panic among everyone.
The establishment of the patient group meant we no longer fought alone or were left isolated and helpless. At first, I did not understand why they had an avoidant attitude. As time passed and with reminders from professional doctors, I realized that a healthy and optimistic positive mindset is the foundation for overcoming disease. I wondered: how to find a balance between publicizing knowledge of the disease and easing patient friends' state of mind? I made some changes—the patient group no longer allowed only discussion of illness, but also allowed relaxed topics. We also set up a chit-chat group, so that everyone would have a channel to release pent-up emotions. When publicizing knowledge of the disease, I also paid attention to priorities and to methods and approaches.
Perhaps many people wonder: why do I have such a complex about helping others?
Because I myself am a beneficiary of patient friends helping others.
I think summarizing my own medical experience can also reflect the improvement and progress in the medical situation of the PJS community over more than twenty years—a good way to encourage and inspire us and all rare-disease patient communities. Every rare-disease patient has gone through the journey from one person to two, to ten, and now to finding hundreds and thousands of patient friends.
When I typed out the welcome message for the 2,000th patient friend joining the group, the plane trees outside the window were putting forth new buds. On that night 20 years ago, curled up on the small guesthouse bed counting my banknotes, I never imagined that the moonlight slipping through my fingers would turn into starlight illuminating the whole community.
In today's chat group, a newborn's first cry and the “no abnormalities” of polyp re-examination reports flash across the screen in turn. The green channels of enteroscopy at more than twenty hospitals are like crisscrossing blood vessels, delivering hope to every life in need of treatment; healthy embryos conceived through third-generation IVF technology are stretching their spot-free skin in warm amniotic fluid; a message pops up at two in the morning—“just finished the enteroscopy,” all went well; and in the gynecology group, another gastric-type adenocarcinoma of the cervix has been caught by early screening!
Dawn never descends suddenly. It is the all-night light of the operating room on a winter night, the PJS Shanghai Multidisciplinary Alliance spontaneously founded by 18 experts, the “Guide to Seeking Medical Care” updated in relay by more than 2,000 patients in the group. These 22 years have taught me the most precious truth: hope is the most potent painkiller. The dark spots will not be branded on our lips forever; when we join hands and grow into a forest, those scattered, star-like marks will at last connect across the earth into a galaxy leading toward the dawn.