BJ Behcet: Conference for Bechet's Disease Awareness

Promoting Awareness

Behcet's disease, also known as "the Silk Road disease," is a rare disease that leads to the development of ulcers. On May 28th, the Behcet's Disease Patient Union from Beijing Baikailan Behcet's Disease Care Center hosted the 2016 International Behcet's Disease Care/Awareness Day with a conference for doctors and patients in Guangzhou to promote awareness.

Behcet’s disease patients and their family members, medical experts, researchers, media staff, and volunteers from all over the world (with a total of 70 people) attended this event and talked face-to-face about disease prevention and control.

The Silk Road Disease

Behcet’s disease is a rare inflammatory vascular disease common in 16-40 year olds. Its typical symptoms are recurrent oral ulcer sores, genital ulcer sores, ophthalmia, and skin damage. It can also affect blood vessels (inflammation), nerves, digestive tract, joints, lungs, kidneys, epididymis and other organs, but these patients generally recover. The eyes, central nervous system, and vessels can be affected as well, and these patients generally have a poor prognosis. Because this disease is more prevalent in East Asia, the Middle East, and the Mediterranean, it’s known as “the Silk Road disease.”

International Behcet’s Disease Awareness Day

May 20th of each year is International Behcet’s Disease Care/Awareness Day. Behcet’s disease patients organize various activities to raise awareness and educate the general public about Behcet’s disease. The month of May became known as Behcet’s Awareness Month, and patients host different awareness-raising activities in different cities. This year in May, Behcet’s Disease Patient Union hosted activities in Dalian, Shanghai, Chongqing, and other cities, This event in South China, Guangzhou was the last and final event of Behcet’s Disease Care Month.

Conference in Guangzhou

The topic of this year’s conference in Guangzhou was “Paying attention to oral ulcers, separating oneself from or preventing Behcet’s disease.” In this conference, Behcet’s disease patients shared their treatment experiences, a well-known professor of Rheumatology and Ophthalmology gave a talk, and researchers gave presentations as well.

Key participants included:

• Guangzhou Zhongshan Medical College’s affiliated hopsital’s Rheumatology department director Xiuyan, who is also a professor
• Zhongshan Medical College’s Optometry professor Li Chunmei
• Behcet’s disease researcher from Beijing Science and Technology (works in Laboratory 112) Du Hongwu, who is also one of the Top 10 Outstanding Youth Volunteers 
• Guangdong’s People’s Second Hospital doctor Zheng Shaoling 
• famous author of I Want a Blooming Life and Bring Me to Fly Lindong Zhinan
• Guangzhou City Shuilefang Health Massage provided support for this year’s event.

A placard is presented for financially supporting the event.

Professor Yang Xiuyan presenting

Professor Li Chunmei presenting

Professor Du Hongwu presenting

Author Lindong Zhinan presenting

Doctor Zheng Shaoling is interviewed by Guangdong TV and Guangzhou Daily Newspaper and other media.

Behcet’s Disease Patients Union manager Lao Junma reports the working situation of the union to conference participants.

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About Behcet's Disease Patient Union

BJ Behcet is an associate member of Transparent Fish Fund's grassroots capacity building program. Behcet’s Disease Patient Union formed in May 2005 and officially registered as a nonprofit at the Beijing Civil Affairs Bureau in May 2014. The group does humanitarian work to save and give care to Behcet’s patients (instead of for profit), promotes awareness and respect for Behcet’s patients, and fights discrimination towards patients. They protect what patients deserve in medical treatment, education, employment, care, and other areas for equal treatment and promote policies that would benefit the society of Behcet’s patients.

Original article written by Cheng Yong, translated by Michael Chau, edited by Carolyn D.