iSeek Raises PH Awareness in ChinaInternational iSeek Campaign

On March 4 the iSeek PH Cultural Center, a Chinese non-governmental PH organization, held an awareness activity named "Seeking Blue Lips and Focusing on Pulmonary Hypertension." This was one of the first times that a Chinese NGO spread PH awareness to the general public. More than 1,000 people witnessed the activities at the iSeek booth, which spurred strong responses from websites, TV, newspapers, and the like.

Professor Chen Jingyu, an expert in lung transplantation and a representative of the National People's Congress, educated the public about PH patients and their symptoms, such as blue lips. He also advocated for equality among healthy individuals and PH patients; currently, treatment costs are high and the medical system for rare-disease patients in China is poor. Dr. Xu Xiqi, who is a PH specialist at No. 361 Hospital, also talked about the origin of PH and treatments. Many PH patients enthusiastically participated in the day's activities. One attendee sang her song, "Stubbornness," which helped all of us understand the strong spirit of PH patients. Chang Xinyue, a girl from Shannxi, spoke of her difficult journey with PH, which moved everyone in the audience. Yong Mei, a famous actress as well as the spokeswoman for the Rare Disease Office of the China Charity Federation, cheerfully sang along with PH patients.

blue lipsThese activities also provided a platform to share medical information. Several doctors gave free consultations, PH patients shared their experiences with newly diagnosed patients, and patients and their families spoke with one another about transplantation and medicine.

More than 99 percent of the visitors had never heard of pulmonary hypertension, but they were quite willing to join the activities and leave their blue lip prints. We have collected more than 100 blue lip prints and will keep on collecting from this day on to promote PH awareness. The activities also promoted Rare Disease Day and the "PuckerUP4PH" campaign in China. The collection of blue lip prints will be undertaken by iSeek among universities and residences in Beijing. It is important to raise awareness of PH in China because PH patients are not entitled to financial assistance for their medications; all of their treatments are self-paid. Although a few of the PH pharmaceutical enterprises have charitable programs, more than 80 percent of PH patients cannot afford treatments, which leads to unnecessary deaths every month. iSeek tries its best to provide information to patients about medical care, education, employment and traveling. iSeek also is working to achieve early diagnosis, early treatment, and treatment coverage.

The event ended with iSeek's connection to three new PH patients. We are now seeking appropriate medical support for those individuals.

- By by iSEEK Cultural Center in Beijing

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.