The Science Popularization Handbook popularizes authoritative knowledge, and the rare disease of "painful breathing" affects 3 million people worldwide
The first education manual for patients with idiopathic pulmonary fibrosis in China has recently been launched. Idiopathic pulmonary fibrosis, also known as a rare disease that causes pain upon breathing, currently has about 3 million patients worldwide. There is currently no large-scale epidemiological research data in China, but the burden of medical and health resources caused by the disease cannot be underestimated. Improving public awareness of the disease, standardizing treatment, and achieving early detection and diagnosis can be achieved.
Professor Dai Huaping of the China-Japan Friendship Hospital explained that idiopathic pulmonary fibrosis is a rare disease. After pulmonary fibrosis, patients will gradually lose their normal function, resulting in increasingly difficult expansion and contraction of the lungs during breathing, and severely impaired mobility. In addition to difficulty in movement, patients also have to endure unimaginable "pain of being unable to breathe", and may even experience worsening symptoms, breathing difficulties, and decreased lung function in the short term due to acute exacerbation, leading to respiratory failure and even death. The etiology of idiopathic pulmonary fibrosis is still unknown, and the main affected population is people over 50 years old, with more males than females. Once diagnosed, the five-year survival rate of patients is less than 30%. In 2018, the disease was included in the first batch of the national rare disease list.
Professor Xu Zuojun from Peking Union Medical College Hospital of the Chinese Academy of Medical Sciences stated that due to the rarity of the disease, unclear clinical symptoms, misdiagnosis, missed diagnosis, or delayed diagnosis are always pain points and difficulties in diagnosis and treatment. Some patients initially only coughed and had some breathing discomfort, thinking that a good rest would relieve them, but later developed into coughing and even sleep problems, wheezing as soon as they walked, and blood oxygen dropped to 70% before entering the intensive care unit. The launch of the IPF Science Popularization Handbook this time fills the knowledge gap, strengthens the awareness of patients and the public about the disease, identifies self changes, actively seeks medical treatment, seeks early diagnosis of the disease, obtains more timely and effective treatment, slows down disease progression, and reduces the possibility of acute exacerbation in patients.
It is reported that the IPF Science Popularization Handbook was initiated by the Koude Rare Disease Center and the Aishen Respiratory IPF Care Center, supported by the Bollinger Ingelheim Public Welfare, and reviewed by multiple domestic experts and scholars in the field of interstitial lung disease. The manual uses a problem directory as the search basis, covering various problems that patients may encounter from diagnosis to rehabilitation. It is divided into eight chapters, including basic knowledge, daily management, regular examinations, complications, emergency treatment, mental health, research progress, and lung transplant related topics. In addition to disease-related knowledge, the manual also covers information on other common interstitial lung diseases, helping patients obtain authoritative and professional disease information.