[Expats & Ailments] Mongolian Child With Rare Disease Treated in Shanghai

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A 7-year-old Mongolian boy suffering from recessive dystrophic epidermolysis bullosa, commonly known as a butterfly child, recently underwent a complicated finger separation surgery at Shanghai Children's Medical Center.

The child recovered steadily after the operation and has returned home for further rehabilitation. His family expressed sincere gratitude for the hospital's exquisite medical skills and considerate care.

Recessive dystrophic epidermolysis bullosa is a severe rare genetic skin disorder. Caused by mutations in the COL7A1 gene, the disease leads to the deficiency of type VII collagen, making the connection between the epidermis and dermis extremely fragile. Patients' skin is as delicate as butterfly wings, prone to blisters and erosion from minor friction. It triggers severe complications, including syndactyly, esophageal stricture, malnutrition and anemia, and greatly raises the risk of aggressive cutaneous squamous cell carcinoma. Currently, no radical cure is available for this illness.

The rare disease affects multiple organs and systems, requiring collaborative treatment across diverse medical disciplines. Finger separation surgery serves as a vital way to restore hand function and improve self-care ability, yet it carries immense risks. Routine medical operations such as anesthesia intubation and electrode placement can easily cause new skin injuries, requiring ultra-precise surgical manipulation.

The children's hospital has established standardized procedures and consultation mechanisms, tailoring diagnosis, treatment and rehabilitation plans for rare and complicated skin diseases.

[Expats & Ailments] Mongolian Child With Rare Disease Treated in Shanghai

Credit: Ti Gong

Caption: The family of a 7-year-old Mongolian child wrote a letter to express their gratitude for the successful treatment at Shanghai Children's Medical Center.

The dermatology department has completed over 30 successful finger separation surgeries for butterfly children. For the Mongolian patient, experts conducted comprehensive preoperative assessment and customized treatment plans. Medical staff adopted gentle anesthesia management and meticulous finger separation to avoid secondary damage, followed by intensive postoperative wound care to prevent infection and adhesion recurrence.

The child's condition deteriorated previously due to improper wound dressing at home. After seeking professional advice, the family traveled to Shanghai for treatment and achieved satisfactory surgical outcomes via streamlined international medical services.

As a featured specialty for international medical tourism, the center's dermatology department has delivered high-quality treatment for hundreds of foreign children with skin diseases. Supported by online consultation, priority access and multilingual services, the hospital allows convenient medical access for young overseas patients. Its international medical department has treated nearly 10,000 foreign pediatric patients in total, with around 2,000 admissions recorded in 2025.