English translation
Dear Amy,
Wilson's disease is a rare autosomal recessive genetic disorder of copper metabolism caused by mutations in the ATP7B gene, with a high incidence among adolescents. Excess copper ions continuously deposit in the body's major organs, causing ongoing and irreversible damage to multiple organs. Fortunately, it is also one of the few hereditary diseases that can be effectively treated. If diagnosis and standardized treatment are delayed, it can easily lead to disability or even death; but with early screening, early intervention, and long-term standardized management, the vast majority of patients can avoid severe damage and enjoy a quality of life and a lifespan almost indistinguishable from those of ordinary people.
The Wuhan Wuchang District Tongxin Wilson's Disease Patient Information Service Center was established on December 29, 2016. Jointly founded by Wilson's disease patients, family members, medical workers, and volunteers from across the country, it is currently the only non-profit charitable organization in China that is registered with the civil affairs authorities and serves the Wilson's disease community. The center builds a bridge for patients to exchange information and share experiences, continuously promotes the realization of patients' equal rights in areas such as medical care, education, employment, marriage, and daily life, and strives to build a support system that integrates social attention, policy protection, and charitable assistance.
Here, I sincerely call on all of society to see this rare-disease community of Wilson's disease: to help bring new drugs and cutting-edge diagnostic and treatment technologies to fruition, to continuously improve medical insurance reimbursement policies, to guide more charitable relief resources toward rare diseases, and to work together to hold up a fair and warm sky for every Wilson's disease patient.
I am Yan Qing, a Wilson's disease patient who has lived with the illness for thirty years, and also the head of the Wuhan Tongxin Wilson's Disease Information Service Center. Having devoted myself to the charitable cause for Wilson's disease as a rare disease for nearly twenty years, I have led my team to win the Outstanding Organization Award and the Best Partner Award from the Rare Disease Organization Development Network, and to earn honors many times in charity venture projects at various levels; I myself was once named an Outstanding Volunteer of Hubei Province.
Here, I want to say to Amy: a rare disease is never a synonym for misfortune. It is an objectively existing part of the process of human life's evolution, inscribed with the code of life's evolution, and it also measures the steady steps of modern medicine's continual breakthroughs. Every exploration and verification of a disease paves a path of survival for the patients who come after. We have never been the weak who passively wait to be rescued; rather, we are fellow travelers on the road, using our own experiences as bridges and our long perseverance as lamplight.
I also want to say to all patients and family members around the world who are like us: please never give up hope. Every time you grit your teeth and persevere, you are rewriting your own destiny; every time you bravely speak out, you gather into flickers of light that push forward the improvement of policy and the progress of medicine. Wilson's disease is never a rest note in the score of life, but a bugle call summoning understanding, calling for action, and driving social change. The true height of a society's civilization has never been measured by how it treats healthy people, but by how it lifts up those who, tormented by illness, still hold hope in their hearts and gaze up at the stars.
I hope the public will see us, and not regard us merely as cold medical cases. We are vivid ordinary people with stories, with dignity, and with equal rights. I hope society will support us, and that this support will not be condescending charity or pity, but companionship shoulder to shoulder as equals, and empathy from the heart. With a sound medical system as a shield, innovative medical technology as a blade, and mutual respect as a cornerstone, may we guard every life that is eroded by the element copper yet still strives to shine. May all Wilson's disease patients bask freely in the sunshine and live in peace; your very tenacity in surviving is the highest praise for the resilience of life.
We have never longed for special favors; we only yearn for an equal, level gaze. Please do not label us as freaks or useless simply because of our illness. Countless patients in our community persist in completing their studies, work at normal jobs, continue to create social value, and likewise long for ordinary love and the warmth of everyday life. We hope more people will come to know Wilson's disease, so that newly diagnosed patients take fewer detours through misdiagnosis and missed diagnosis, and can seize the best treatment window at the early stage of onset; we look forward to more affordable drug prices and more comprehensive medical insurance coverage, so that no ordinary family will empty its savings to pay for treatment and fall into the desperate plight of having no drug to cure and no money to treat.
What we want has never been pity, but respect; not one-sided assistance, but walking side by side. Accept us into normal society, and give us the same chance as everyone else to chase dreams and embrace happiness.
Even though my body has long been bound by illness, my steps forward will never stop. Like every ordinary person, I too deserve flowers and sunshine, and to live as the ideal version of myself in my heart.
Yan Qing
Head, Wuhan Tongxin Wilson's Disease Information Service Center
June 2026