English translation
Dear Amy,
Hello!
When you are out on the vast sea, your two hands rowing the oars in “conversation” with the waves, please know this: on this end of the earth, there is a group of people who are with you.
My name is Xiaolan; you can also call me Nicole. I am a patient with short bowel syndrome (SBS), and also an expert patient at China's “Changkanghui SBS Patient Care Center.”
What I want you to know about SBS
Short bowel syndrome is a syndrome that arises when extensive resection or bypass of the small intestine, caused by various reasons, significantly reduces the effective absorptive area of the intestine, and the remaining functional bowel cannot meet the patient's nutritional needs. It is characterized mainly by diarrhea, acid-base and water-electrolyte disturbances, and disorders in the absorption and metabolism of various nutrients. Patients may need to depend on parenteral nutrition (intravenous infusion) or enteral nutrition (special nutritional solutions) for the long term, or even for life, to sustain their lives.
At present, our country still lacks unified national SBS registry data. Judging by the number of people in Changkanghui's three patient groups, there are more than 1,000 people in total, of whom child patients account for about 60% and adult patients about 40%. The core challenges this community faces are not only physical—specialist medical resources are highly concentrated in first-tier cities, there is insufficient guidance for families caring for sick children, and the cost of treatment is heavy—but also psychological and social: the helplessness in the early period after diagnosis, the loneliness of long-term home treatment and care, and the dignity dilemmas when out in public.
What we are doing — moving from “mutual aid” to “empowerment”
Changkanghui is the first, and currently the only, mutual-aid charity group in China whose core members are short bowel syndrome patients and their families. Upholding the mission of “joining forces to watch over one another; the bowel may be short but our bond is long,” we take the “starfish spirit” as our core—like starfish, possessing strong adaptability and regenerative power, and the ability to glow in the dark and light the way for one another.
In terms of patient services
In September 2025 we released China's first “‘Long and Lasting’ Short Bowel Syndrome Patient Popular-Science Handbook”—126 frequently asked questions and 200 pages of solid content, hailed as “a treasury for patients' home recovery.” More than 300 copies have been distributed free of charge, covering 29 provinces, autonomous regions, and municipalities across the country. Also, since the end of last year, we have been pushing out a “short-bowel knowledge card” every day to cultivate patients' self-management ability, with a daily open rate of over 70%. In addition, to improve domestic SBS patient data, we are also carrying out ongoing patient registration.
In terms of doctor-patient communication
In 2025 we held 17 online doctor-patient exchange meetings and 2 offline empowerment sessions for expert patients, covering over a thousand participants, with an average online viewing time of over 60 minutes per session. We broke down information barriers and let experts' solid knowledge reach patients directly.
In terms of policy advocacy
Over the course of the year, Changkanghui's official service account published 12 interpretations related to “Huiminbao” (city-customized commercial insurance) and medical insurance policies, and successfully pushed Shenzhen, Beijing, and other provinces and cities to include teduglutide (an innovative drug for SBS) in the scope of Huiminbao reimbursement. With real action, we have proven that patient organizations can become drivers of policy change.
In addition, we also pay attention to the dignity of patients when they travel—in a charity venture project jointly launched by the Kōde Rare Disease Center and Alibaba Health, the Changkanghui community's “no awkwardness” travel-kit trial project received support and was carried out smoothly. We hope that every patient friend can walk in the sunshine with peace of mind, no longer held back by the question of “how to handle a ‘special situation’ in public places.”
To you, who are rowing right now
Amy, you rowing without pause on the sea, and we who infuse parenteral/enteral nutrition every day, are actually doing the same thing—
Going forward with all our might.
What you face is 5,000 kilometers of raging waves; what we face is a physical condition that could strike suddenly on any given day. You row for 2 hours and rest for 2 hours; we too cycle between “being able to eat normally” and “having another bowel obstruction.” The space on your boat is less than four square meters; our “world,” too, was once only the distance between the hospital ward and home.
But do you know what?
Rare-disease patients are another group of people in this world who are “crossing the Atlantic”!
We have no one to navigate for us, no supply ship, no finish line. What we have is only the courage, each day we wake up, to choose to keep rowing.
You are crossing the Atlantic carrying the voice of the rare-disease community, and I want to tell you:
This voice, we have been brewing for a long time.
Every popular-science post, every online/offline meeting, and every policy interpretation by Changkanghui has been speaking up for this community.
To patient friends around the world
Dear patient friends,
I know that being ill sometimes makes one feel “exiled” to a lonely island. But Amy, with her actions, tells us—
Between one lonely island and another, a bridge can be built.
Do not be ashamed to let your voice be heard. Your story, your plight, your needs—all deserve to be taken seriously by the world. Every letter Amy reads out on the sea is light that we send out together.
“Short-bowel people don't give up”—this is something we often say. Not giving up is not because we are unafraid, but because, though afraid, we still choose to row.
To society
I hope that one day the three words “rare disease” will no longer make people feel unfamiliar or fearful. I hope that every life, no matter what illness it carries, can walk in the sunshine with dignity. I hope medical insurance policies will cover one more drug, I hope public places will have one more “accessible” restroom suitable for short-bowel patients, and I hope every strange look can turn into an understanding nod.
To myself
I often think of a saying:
“Love never fails.”
It is not far away; it is right in every moment when patient friends answer one another's questions, every early morning when policy advances, and every moment we choose not to give up.
This saying also reminds me: doing these things, not every one will necessarily show a result, but the heart that acts out of love will not be wasted, and will never truly fail.
This is the way I want to keep living out.
Amy, the days at sea must be very hard. But please remember: when you row, you are rowing not only the boat, but also the hearts of countless rare-disease patients.
Every stroke of yours is an act of “being seen.”
The wind and waves will pass, but the voice in this letter will keep echoing over the surface of the sea.
Wishing you safety, and wishing you a finished race!
Xiaolan
Short bowel syndrome patient; expert patient at Changkanghui SBS Patient Care Center
June 21, 2026