Can colds kill HIV-infected people?
Donating bone marrow requires spinal fluid to be drawn from the spine?
Is Tourette's a mental illness?
Society's misunderstanding of patients makes them suffer from discrimination and affects their daily lives.
In view of this, the new service team "Imagineer" under the "Servant Leadership Programme" of the City University Development Office, the Hong Kong Society for Rehabilitation Community Rehabilitation Network Patient Mutual Help Development Centre and three patient self-help organizations, namely the Hong Kong Tourette Association , the Hong Kong Bone Marrow Transplantation and Rehabilitation Society and the AIDS Health Concern Society, to try to eliminate social stigma and public misunderstandings for patients with micro-movies and creative publicity methods.
Photography: Huang Baoying
The micro-movie filmed by the City University of Hong Kong (CityU) student service team "Imagineer" in collaboration with three patient self-help organizations was successfully broadcast at a recent online screening.
The new filmmakers are still up to the challenge, just to spread the correct patient information to all strata of the society, so that the public can better understand the truth of Tourette's disease, bone marrow transplantation and AIDS.
(From left) "Imagineer" members Tan Wanhua (2nd year of Accounting), Li Leyi (1st year of Economics and Finance) and Huang Haoshen (3rd year of Electrical Engineering) thought the plan was of great significance and decided to take action to eliminate misunderstandings about patients.
The micro-movie brings out the daily expectations of Tourette syndrome patients and the public's understanding
Tourette syndrome is a chronic neurophysiological disease in which the patient's muscles will involuntarily repeat and twitch suddenly, such as blinking, shaking his head, and making gestures. 30% of children's symptoms persist into adulthood.
The society does not have a deep understanding of the disease, which makes children with Tourette syndrome vulnerable to discrimination and even bullying in schools, and parents often suffer from severe pressure due to lack of support.
Leung Wai Min (Marina), vice president of the Hong Kong Tourette Syndrome Association, shared her personal experience - her son was hospitalized, and even some medical staff were ignorant of the disease, making it difficult for them to seek medical treatment.
So she joined a group of fellow travelers to set up an association to provide patients and their caregivers with correct information and spiritual support.
With the help of the innovative thinking of CityU students, the association hopes to increase public awareness and acceptance of Tourette syndrome.
Leung Wai Min (Marina), the vice president of the Hong Kong Tourette Syndrome Association, whose son is a child with Tourette Syndrome, encourages fellow travelers with her own experience.
Sam Huang, a student from CityU who participated in the project, shared that he was not aware of Tourette Syndrome at first, and realized the difficulties of the association during the planning and promotion process.
"Due to the lack of awareness of the disease, and various misunderstandings and discrimination, it will take some time for the public to re-understand it." He also pointed out that in the past, the association mainly used Facebook as a publicity channel; Increase your influence with Instagram.
Therefore, the students specially shared the life stories and cold knowledge of Tourette Syndrome patients on Instagram in the form of contributions, creating more outstanding content, and the number of followers on the social platform has also increased significantly.
Donating bone marrow is like donating a blood cell village story and interpreting the story of "Searching for Bone Marrow"
The public misconceptions about bone marrow transplants are not only stressful for patients, they may also deprive them of timely treatment.
Kitty Leung, chairman of the Hong Kong Bone Marrow Transplantation and Rehabilitation Association, shared that there is a general misunderstanding about bone marrow donation and hesitancy in the community, thinking that general anesthesia is needed and spinal fluid is extracted from the tail keel.
"In the past, bone marrow was extracted from the pelvis, but now peripheral blood stem cell donation is commonly used. The donor only needs to inject granulocyte colony-stimulating factor a few days before donation, and the hematopoietic stem cells in the bone marrow can swim into the blood, and centrifuge the blood. It takes about 3 to 4 hours to collect by machine, and the process is similar to blood donation, and the donor can rest for 1 to 2 days without any problems.” At present, there are about 150,000 people registered for bone marrow donation in Hong Kong, which is quite insufficient.
The cumulative number of people who have been matched and have made donations over two decades is only a few hundred.
In other words, there is generally only a 1 in 5,000 to 1 in 10,000 chance of finding a perfectly matched unrelated donor.
Kitty Leung, chairman of the Hong Kong Bone Marrow Transplantation and Rehabilitation Society, has benefited from bone marrow donation and regards bone marrow donors as her own regenerative parents.
In order to eliminate the public’s misunderstanding of bone marrow donation and call on more people to register as bone marrow donors, CityU student Cindy Tan and the team members introduced the process of finding suitable bone marrow in a simple and easy-to-understand way using the Cell Village as the background of the story. .
They also set up an Instagram account for the association to increase interactivity through question and answer, and the association can also use it to understand the opinions and views of the public.
Discrimination stems from fear, kicking off AIDS labels, relying on education
If the public misunderstands and discriminates against HIV-infected people, it will not only affect their condition, make them less afraid to face or seek medical treatment, but also increase the risk of transmission.
Duncan, Director-General of the AIDS Health Concern Society, said that the diagnosis of AIDS is not the end of the world. There are drugs that can effectively control the disease, so that the life expectancy and health of AIDS-infected people is no different from that of ordinary people.
"Unfortunately, Hong Kong has always lacked education on AIDS knowledge, and online information is more wrong. In fact, daily social contact does not cause AIDS. The reason why the public discriminates against or fears AIDS infected people is because of lack of awareness of the disease. know."
"Imagineer" member Li Leyi (Choco) admitted frankly that there is still a gap between the more accepting younger generation and people living with HIV.
When she promoted the group's new Instagram account among friends, she drew some skepticism.
"They generally think that they are not HIV-positive, so they don't need to care about the disease. If friends find out that they are following the organization's social platform, they may be considered to have a certain relationship with AIDS." , Choco hopes that through effective education and publicity, the public can pay more attention to the situation and needs of AIDS-infected people with a more open mind, and ultimately kick the negative label of AIDS away.
Revisiting the online screening of "Similarly Telling Stories" micro-movie:
www.facebook.com/cityusltp
Track the advocacy movements of three organizations:
Hong Kong Tourette Association: www.instagram.com/hkta_tourette
Hong Kong Bone Marrow Transplantation and Rehabilitation Society: www.instagram.com/hkbmtpa
AIDS Health Concern Society: www.instagram.com/positive_outlook_community
(Information and photos provided by customers)
