Brushstrokes paint tales of painful disease

In the courtyard of Beijing's Xuannan Bookstore, an unusual art exhibition is quietly unfolding. Each painting features figures wracked with pain: gripping knees, clutching elbows and wincing in discomfort.

This public-interest exhibition is dedicated to raising awareness on tenosynovial giant cell tumor (generally benign growths), a rare joint disorder.

The artworks are the result of a collaborative effort by patients, their families, medical professionals and artists.

Organized by China Alliance for Rare Diseases, the Beijing Association for Rare Disease Diagnosis, Treatment and Security, and the Chinese Organization for Rare Disorders, the exhibition ran from July 4 to July 6.

"Swollen joints, pain, stiffness and limited mobility. These paintings aren't just artistic expression — they're windows into the lived reality of patients," says Li Linkang, executive director of China Alliance for Rare Diseases, during a salon event. Li points to a hand-drawn image of a deformed joint, its twisted lines and vivid red tones capturing the raw, daily suffering from those living with the rare disease.

The joint disorder is a rare condition that originates in the synovial lining of joints, bursae and tendon sheaths. With an incidence rate of just one in 20,000, it has been included in China's catalog of rare diseases.

According to experts, the disease is easily misdiagnosed or overlooked altogether because of its rarity and often subtle symptoms. Data shows that around 60,000 new cases are diagnosed in China each year.

Niu Xiaohui, director of the bone and soft tissue tumor diagnosis and treatment center at Beijing Jishuitan Hospital, believes that doctors need to step out of the clinic to raise public awareness; while the public needs to stay alert to spot rare symptoms.

Huang Rufang, founder of Chinese Organization for Rare Disorders and a rare disease patient himself, echoes this call for broader public education.

"Through the paintings, we hope to portray the pain and challenges patients face and help people realize that this rare tumor isn't as distant from our lives as it might seem," Huang says.

Outside the salon, the exhibition space was steadily filling with visitors. A mother crouched down beside her young daughter, gently pointing to a cartoon illustration on a display board.

"This illness causes little lumps to grow inside the joints," she explained softly.

In recent years, China has placed growing emphasis on building a stronger support system for people with rare diseases. Enhancing access to rare disease medications has been incorporated into its overarching Healthy China 2030 blueprint.

China's official list of recognized rare diseases has expanded to 207 conditions. Notably, more than 90 rare disease drugs have been included in the national medical insurance system, significantly easing the financial burden on patients.

Meanwhile, innovative drugs for treating the rare disease are currently undergoing the regulatory review process for market approval in China.

According to Vivian Zhang, managing director and general manager of Merck China Healthcare, rare disease diagnosis and treatment involve several critical links, from awareness and clinical care to drug availability.

"It takes a joint effort from all sides to bridge the gaps," Zhang says. "Only by working together can we connect these isolated islands and form a continent of hope."

Xinhua