This acute attack of psoriasis can be fatal. my country’s first generalized pustular psoriasis patient care organization was established

On the occasion of the International Rare Disease Day, today, the “Ginkgo Rare Skin Disease Care Center”, a public welfare organization for patients with rare skin diseases, officially launched in Shanghai was established. This is my country’s first public welfare organization for patients with generalized pustular psoriasis (GPP). Ringer Ingelheim’s public welfare support has built a public service platform integrating emotional care, disease popularization, doctor-patient communication, diagnosis and treatment support, and improving the security system.

GPP is a rare and serious skin disease. According to statistics, in China, only 1-2 people per 100,000 people suffer from GPP. In an acute attack, the patient’s skin becomes red and numerous sterile pustules appear in various areas of the body, with symptoms of fever, chills, and painful skin lesions, which can lead to organ failure and infection in severe Complications, even life-threatening. GPP acute attacks are not only unpredictable in severity, but also elusive when they occur. They can occur at any time and take weeks or months to recover. Many patients even have symptoms that persist between two acute episodes.

“In recent years, medical research in the field of GPP disease has made great progress, bringing new hope for the treatment of the disease. In addition to the innovation of treatment plans, the pattern of GPP diagnosis and treatment has The change of the disease also needs all parties to work together to promote from disease diagnosis, social security and other aspects.” Professor Xu Jinhua, director of the Department of Dermatology, Huashan Hospital Affiliated to Fudan University, said, “As a doctor, we hope to approach these patients, listen to their voices, and make The latest scientific knowledge and diagnosis and treatment solutions will bring them. Patient organizations will become a bridge for us to get close to patients, allowing us to better serve them, improve the diagnosis and treatment environment, and ultimately allow patients to have a higher quality of life.”

Each patient’s illness experience may be different, but some common issues deserve attention. “Most of my patients and friends have gone through a long and tortuous process of seeking medical treatment. After the diagnosis, we suffer from a lack of effective treatment options, and often fall into a desperate situation of exhaustion.” Representative of patients from Ginkgo Rare Skin Disease Care Center Ms. Liu said, “We have established a patient organization to unite the majority of patients and friends, hoping to speak out, communicate with patients and friends through a unified channel, and empathize and encourage with patients and friends; introduce the attention and resource support of all walks of life to jointly solve the diagnosis. The dilemma of difficult and difficult to treat.”

“Because the exact cause of GPP is still unclear, and there is no recognized diagnosis and treatment standard, the current treatment methods lack in-depth and lasting efficacy, and patients are faced with difficult diagnosis, Difficulty in treatment.” Professor Zheng Min, Honorary Director of the Department of Dermatology, Second Affiliated Hospital of Zhejiang University School of Medicine, said that in addition to the impact of disease on health, the dilemma of diagnosis and treatment also has a huge impact on patients. They usually suffer from enormous stress at the levels of psychology, physiology, social relations, family burden, etc..

In June 2021, the Chinese Generalized Pustular Psoriasis Patient Tissue Incubation Project was launched. In just half a year, the project has developed a nationwide patient community of more than 100 people , this number is not easy for such rare skin diseases. Based on this, patient support activities such as building a patient service platform “GPP Information Platform” WeChat public account, holding the first China GPP doctor-patient exchange meeting and other patient support activities have been successively carried out to promote in-depth exchanges between patient friends and doctors and patients, so that doctors can understand the real demands of patients, which not only Actively explore to improve the living conditions of patients, and also create favorable conditions for the establishment of public welfare organizations for patients.

“With the keen attention and strong support from all walks of life, the Ginkgo Rare Skin Disease Care Center was born out of love. The patient organization is symbolized by Ginkgo biloba, which represents a strong adaptability, and represents the beauty of all walks of life for patients. Blessings.” As the project initiator, Huang Rufang, founder of the Kode Rare Disease Center, said that the Ginkgo Rare Skin Disease Care Center is not only the spiritual home of the patients, but also the “almighty life steward” of the patients, bringing together more resources and strengths More tangible support will be provided for this rare disease group.

*Wenhui’s exclusive manuscript, please indicate the source when reprinting.