Turning a new leaf on treatment of skin diseases

An educational book providing physical and psychological guidance on rare skin diseases was released in Shanghai over the weekend.

It is designed to raise social awareness about skin diseases and enhance patients' understanding.

Generalized Pustular Psoriasis, or GPP, is a rare disease with very low incidence in the world. In China, there are one to two GPP patients per 100,000 people. There are about 20,000 GPP patients in the nation.

People with GPP can suffer sudden flares with pustules covering large areas of the body with fever, shivers, intense itching, a rapid pulse, fatigue, headache, nausea, muscle weakness and joint pain.

Flares also can cause life-threatening complications such as organ failure and even death.

Since GPP is a rare disease, both the patients and even some doctors have limited understanding on the disease. Many patients get the diagnosis only after delays and frequent hospital visits, experts said.

Prevention and control

"The causes for GPP can be infections, stress, corticosteroid treatment withdrawal," said Dr Xu Jinhua from Huashan Hospital's dermatology department. "So it is important to promote the knowledge on GPP prevention and control among patients to reduce the risk of flares."

The book collects questions that patients care the most about, and provides direct and clear explanations.

It also offers tables and disease management forms to each patient to record their own condition to help them better control the disease as well as provide reference for doctors to give individualized treatment plan, said Dr Gao Xinghua from the First Hospital of China Medical University, the main editor of the book.

Huang Rufang, founder of Chinese Organization for Rare Disorders, added: "GPP imposes serious burden and pain to patients and their families. We hope the book can provide them with scientific understanding and raise their awareness to help them properly live with the disease with better life quality".

The organisation teamed up with Boehringer Ingelheim, Yinxing Rare Skin Disease (GPP) Cancer Center to jointly release the book.

Experts said GPP management is a long-term campaign. With the introduction of more innovative medicines and establishment of a comprehensive patient management system, patients are expected to enjoy a better life quality.