News report by Sing Tao Daily

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Laughter and cries of Angelman Syndrome Children

Patients with Angelman Syndrome, a rare genetic disease, tend to lack language skills, but to express themselves through laughter and cries. Families of patients recalled with tears the miserable moment how their children were openly condemned by others when they shouted on public transportation. They said that they have no choice but to ask for public understanding and acceptance. Fear of causing nuisance to the public, families of patients did not dare to bring "little angels" to the theatre for years. A rare disease group is out there to initiate private theatre activities, so “little angels” be able to enjoy family fun inside the theatre.

Diagnosed with Angelman Syndrome, Tang Pei-jun, now 21 years old, has a lack of language skills. Smiles and laughter are her only communication skills. Tang’s mother recalled the moment when Pei-jun, four years old back then, prompted her and her husband to get off a bus by shouting loudly on the bus, a lady sitting in the front scolded Pei-jun by yelling at her "are you not noisy enough?" Even though Pei Jun’s parents made instant apologies to the lady, they were still accused of failing to teach Pei-jun to behave properly. During the interview, Pei-jun’s mother wept and said that she has no choice.

Public understanding needed for unintentional disturbances

Zhang Ting-er, now 12 years old, was diagnosed with Angelman Syndrome at the age of two. Ting-er, who would laugh during medical injections, appeared to suffer from delay in development at just a few months old. To stop Ting-er from losing his temper on public transportation, Ting-er’s mother has no choice but would use snacks to coax him secretly sometimes. Her act was however criticized by the others as eating is not allowed on public transportation. It made her feel sad.

Angel Families are hard to have family fun as the others. Tang’s mother recalled that Pei-jun, who was 10 years old at the time, once made a nuisance of herself by laughing and shouting whilst watching a drama in the City Hall just to express herself. Not wanting to cause more disturbance, Tang’s mother had not taken Pei-jun to any theatre since then. Likewise, Ting-er required cuddles and comforts and could not sit still during his first visit to theatre at the age of four.

Joson Chan, the Founder of [Hong Kong Angelman Syndrome Foundation] said that many “little angels” are hard to enjoy movies as the ordinary people. So the Foundation was sponsored to reserve a theatre for private use by the “little angels” on the 15th of this month, which is also known as [“Global Angelman Syndrome Day"]. Having the opportunity to once again step into the theatre, both Pei-jun and Ting-er were very excited. The mothers of Pei-jun and Ting-er felt so happy and grateful. Chloe, Joson’s six years old daughter, was described by his father being “exceptionally cooperative and enthusiastic” during her first visit to a theatre.

Angelman Syndrome is a rare genetic disease. Its symptoms include severe mental and language barriers, gait disturbance, epilepsy and etc. Patients often exhibit a pleasant, easily excited, laughing and clapping frequently. Since the mid-90 to now, Hong Kong recorded two to three new cases every year and so far has recorded more than 50 cases.

Social integration skills training

Hong Kong Angelman Syndrome Foundation was established last year. It connects the “little angels” who are scattered in the different corners of the city with community support which included medical trends, information forum and workshops. The Founder hoped to strengthen the communications between the children with special needs and the society.

Fighting alone for so many years, the mother of Ting-er (now 12 years old) signed up via Internet to become a member of the Foundation not until recently when she heard of such foundation on TV. She said that she has first come to know the other patients of the same disease through gatherings organized by the Foundation. It has also come to her knowledge through the regular update on overseas medical development that the study of medication or prescription of the disease is underway overseas. She was deeply encouraged by such news.

Foundation support for Angel Families

The mother of another angel, Pei-jun, being eluded information about the disease from the hospital, has only managed to take care of his daughter as a mentally disabled child. Not until she joined the Foundation last year she came to know that the disease can be cured through continued training and development. At present Pei-jun is engaged in the daily training and group activity conducted by the Day Activity Centre.

Hong Kong Angel Syndrome Foundation is a non-profit organization founded by an Angel family in June 2015 which is to provide support to Angel Families in Hong Kong and Taiwan. Founder Joson Chan said that the Foundation now attract 19 Angel Families and has held a number of workshops, gatherings and training courses.

Joe, the wife of Joson, who did not accept the fact that her daughter is sick at first, now wants to share the mentality of the time with other families to help them out of difficulties. The Foundation will cooperate with different commercial and welfare institutions to raise public awareness that “Angelman is not fearful”. As long as the public are willing to take a step forward, the “little angels” will be integrated into and form part of our society.

Joson said that he hopes to strengthen the understanding and communications between the children with special needs and the society at large through the Foundation. "When the community comes to know the patients’ situation, it will be able to render appropriate assistance", said Joson.

Reporter Zhu Yunfei

Treating families of rare genetic diseases

The last day of February each year is known as the World Rare Disease Day. There are around seven thousand kinds of "rare disease" in the world. One patient out of approximately every 15 people is suffering from rare diseases. However, the health care system in Hong Kong has not made any official definition of rare diseases. Doctors refer to rare genetic diseases mostly familial. The lack of definition and rare disease patient roster in our health care system largely limits the necessary medical and welfare support required by the patients. More resources are required and establishment of genetic clinics is recommended to strengthen the doctor awareness to rare diseases, so that the patients and their families be treated.

Scholars advocate genetic clinics

According to World Health Organization statistics, 6.5 to 10 cases out of every million disease are regarded as rare diseases. Dr Chung Hon Yin, Clinical Associate Professor of the Department of Paediatrics and Adolescent Medicine, LKS Faculty of Medicine The University of Hong Kong said that although Hong Kong has an internationally recognized health care system, awareness of rare diseases, their prevention and protection are far lower than the United States and Europe and other regions in Asia.

Dr Chung pointed out that because of the exception of rare diseases, doctors failed to equip themselves with adequate knowledge concerning such diseases. The Government will allocate resources based on popularity of diseases and as such more common diseases will get more resources, compared to the small number of rare disease patients, such as those who are suffering from spinocerebellar atrophy, tuberous sclerosis complex etc. The latter will receive less resources. He hopes the Government would invest more resources for rare diseases and to establish genetic clinics, so that patients and their families can be treated to relieve their physical and mental stress.




News Report by Sing Tao Daily (Facebook translated version)

Sing Tao Daily | 29-02-2016

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