“For Hemophilia patients, ‘early diagnosis and early treatment’ is particularly important”. The Second Hemophilia Children’s Summer Camp, organized by China Children and Teenagers’ Fund, was launched in Shenzhen in the afternoon of March 13. The theme of this event was “Stop bleeding, Free Living”. The summer camp was designing for 6 to 13-year-old Hemophiliac children and their families. Through disease knowledge education, family counseling, inspirational story sharing, art learning and creation, as well as other sections, it can popularize the standardization of prevention and treatment of Hemophilia, and help Hemophilia children to cultivate independent, self-confident and optimistic states of mind. In addition to Shenzhen, the summer camp will also settle in Beijing, Shanghai, Nanjing, Hangzhou, Guangzhou, Changchun, and Qingdao, for more Hemophilia children and their families.

During the event

Hemophilia is a hereditary hemorrhagic disease. In China, the treatment of Hemophilia is faced with the situation of low diagnosis rate, low treatment rate, and high disability rate. According to statistics, China currently has about 136,000 Hemophilia patients. Due to a lack of standardized preventive treatment, 50% of Hemophilia patients disabled under 14 years old, and 90% of which disabled under 18 years old. The physiological disease during the critical period of children’s growth have caused great obstacles to the mental health of Hemophilia patients. In fact, Hemophilia patients can be effectively reduced the bleeding frequency and even achieve the “zero bleeding” goal as long as it is detected early and treated in standardized preventive treatment.

In order to further popularize the standardized prevention and treatment for Hemophilia children, the first Hemophilia Children Summer Camp was successfully held by the China Children and Teenagers’ Fund last year. This year, the second summer camp for Hemophilia children covers Hemophilia children and families in eight cities, including Beijing, Shenzhen, Shanghai, Nanjing, Hangzhou, Guangzhou, Changchun, and Qingdao.

Summer Camp participants interacted with teachers

The theme of the opening ceremony of the summer camp in Shenzhen was “Walking in the sea of books, making dreams come true”. Through the interaction of arts and humanities, the organizer aimed to help Hemophilia children cultivate positive and optimistic attitudes. In the “Book Safari” reading section, Hemophilia children chose inspirational stories appropriate for their age, through interesting interaction, reading sharing, creative bookmarks production, and various forms of activities, to understand the positive and optimistic perspectives of the stories. In the “Art Dream” class, professional teachers guided children to fully display their imagination and creativity, and show their dreams with the brushes to draw their self portraits. Through imaging the future, children can build confidence to get rid of the disease, and achieve their goals of bright future. In the meantime, parents can gradually realize the inner world of their children. In the “Free Living: The Story between Kangkang, Xiaoba and Me”, parents and their children participated in the activity to create a long scroll of urban painting, aiming to cultivate the hand-on ability and teamwork spirit of Hemophilia children. By painting on the scroll, children let the cartoon character, Hemophilia boy “Kangkang” and coagulation factor “Xiaoba” travel around the city together. During the close camp ceremony, all the Hemophilia children and their families donated their collective painting works to the China Children and Teenagers’ Fund, and the works will be used for charity in the future through the foundation’s public welfare platform.

Children painted their dreams with crayons

Parents and their children worked together to create the long painting of the city

This year, we will continue to work with Sherpa China and other companies to promote the summer camp in for Hemophilia children in more cities and communities across the country, said the director of China Children and Teenagers’ Fund. By building the platform of summer camp for Hemophilia children, we will help Hemophilia children and their families with popularizing the concept of scientific treatment, and make them benefit more from the program. In addition the program is aiming to call on every sector in the society to pay more attention to Hemophilia patients.

As a global leader in the field of rare diseases, Sherpa China has been actively working with all sectors of society to help Hemophilia patients improve the levels of diagnosis and treatment, as well as enhance the feasibility of internationally leading treatment programs in China, said Peter Fang, Director of Asia-Pacific and General Manager of Sherpa China. In the future, the standardized prevention and treatment of Hemophilia will be further popularized to ensure the physical and mental health of Hemophilia children during the critical period of their growing, and help them realize the vision of “Stop bleeding, Free Living” at an early date.

Doctors led Hemophilia children to learn “YOYO exercises” together

During the summer camp, some well-known doctors and nursing experts also joined the event to explain Hemophilia treatment concepts. Experts led Hemophilia children to learn “the Manual of Healthy Growth of Hemophilia Children”, and the “YOYO exercises”, the first exercise for the joints health of Hemophilia patients in China, in order to protect the joints with scientific and appropriate exercises to prevent irreversible joints disability caused by diseases. “For Hemophilia patients, the ‘early diagnosis, early treatment’ is especially critical. The early implementation of standardized prevention and treatment with sufficient dose can effectively reduce the number of joint bleeding and control annual bleeding within three times, so that is can avoid permanent joint injury or loss of motor ability, said Wang Ying, Director of Blood Oncology Department of Shenzhen Children’s Hospital.