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Keeping Diabetes Advocacy Positive in China

June 16, 2019

 

Adam is a powerhouse of a diabetes advocate in China and we were lucky to meet him to learn more of his projects as part of the Medtronic Bakken Award earlier this year. Check out his story in English and in Chinese!

 

Hi, everyone. I am Rui Zhang from Beijing, China. I was diagnosed with type 1 diabetes when I was nine years old and now it has been 17 years. First of all, I should thank my family and friends. The care and tolerance for me has enabled me to face diabetes with positive and optimistic attitude. For 17 years, I have regarded diabetes as my good friend. I think it can bring me a more self-disciplined lifestyle, help me resist the temptations in the bustling world, and let me have a healthy body and a mature mind.

 

In China, there are more than 100 million people with diabetes, and nearly 10 million of them have type 1 diabetes. According to incomplete statistics, in recent years, the age of onset of type 1 diabetes has a tendency to become younger and younger. I was diagnosed with diabetes when I was 9 years old. So I know that in the stage of growing up from a teenager to a young person, people with diabetes face psychological and physical challenges. Therefore, I am currently working on the medical and social problems faced by adolescents and young people with type 1 diabetes to help them live a happier and healthier life.

 

My exposure to my diabetes circle started in my sophomore year. Under the guidance of my uncle (a diabetes worker), I was fortunate to join the Beijing Diabetes Prevention Association and met with many outstanding people including Mr. Chen Wei, the director of BDPA, He Daoxin, the secretary general, and Zhang Qi, an excellent leader. Under their recommendation, on the opening ceremony of the 6th United Nations Diabetes Day in Beijing, I delivered a speech about my experiences. Through this event, I was able to enter the circle of patients with type 1 diabetes and met many patients. Through this process, I gradually realized that in our diabetes community, there are many patients with poor blood sugar control or negative mentality. To some extent, this is because Chinese society does not have enough knowledge of the diabetes community.

 

On the one hand, many people with type 1 diabetes have insufficient awareness of self-management, resulting in unsatisfactory blood sugar control; On the other hand, type 1 diabetes is generally younger in age. During their growing process, they will continue to face social pressures from family, school, work, etc., which would render them form a hidden emotional problem and lead to their loneliness, lack of self-confidence, the idea of escaping from the crowd and so on.

 

After witnessing many cases of psychological problems caused by their unrecognized social status, I decided to stand up, hoping to increase the society's awareness of the diabetes community by participating in some public activities and publicity. Despite a lot of pressure, I have never been afraid to tell others that I live with diabetes.

 

For example, in 2014, I was involved in the filming of a documentary about type 1 diabetes in the CCTV Population section named People Hidden on Isolated Island. This is a nation-wide program, in which I have the courage to tell my story and social problems and psychological pressures faced by this group, so as to appeal to the society for the concern of this special diabetes community. In the same year, I also participated in the “Beijing Marathon Public Welfare Run” jointly organized by the Chinese Medical Association and the Beijing Diabetes Prevention Association. I hoped to show the healthy image of people with diabetes by participating in marathon. Although we only completed the distance of 5km, we successfully demonstrated the positive image of our hard work. At the same time, I also hoped that by sharing the stories of me and excellent friends around me, I could establish a healthy and optimistic image to my diabetes companions and help some patients who are still inferior and autistic to get out of the haze. For example, I submitted my own story to the Chinese diabetes magazine called Friends of Diabetes, and I was honored to be the cover person of that issue; I also cooperated with the business unit of Medtronic China to share those optimistic stories of patients who are optimistic about diabetes to more and more people.

 

 

I have established a small-scale public welfare group with a few friends with diabetes, hoping to improve the blood glucose management and mental health through mutual help and mutual encouragement among people with diabetes. We have held a number of exchanges for patients with type 1 diabetes. We invited experts and some diabetics to share some blood glucose control experiences and methods. And we also went to the outdoors for hiking, picnicking, picnics and other activities. For example, in the beautiful autumn in October 2018, we brought some people with diabetes to go for a hike in the suburbs of Beijing, and arranged some education around blood glucose management for them to consider during the hike, so everyone can learn some knowledge as well as exercise. In order to make the activities more educational and helpful, I also strive to improve my knowledge of blood glucose control and diabetes management, and I participated in the 2016 Annual Symposium Diabetes Education and Management of Chinese Diabetes Society organized by the Chinese Medical Association Diabetes Branch. In 2018, I also joined the classes of blood glucose control and management.

 

Among many activities, what impressed me the most was the “Youth Health Summer Camp” organized by Beijing Children's Hospital. I participated as a volunteer and communicated with young people with diabetes from Beijing, Shanghai, Hong Kong and Taiwan. The sweetness, innocence and self-reliance of them deeply touched me. They brought me a lot of happiness, and also inspired me to live a better life. Through this activity, I also met the parents of young people with diabetes. When communicating with them, I knew that they bear a lot of pressure and painstaking in order to let their children grow up without the bother of any worries. From then on, I am determined to help these young people with diabetes and their parents through sharing my experience, to help them grow better and relief those parents’ pressure.

 

 

We named our team as "The Smurfs", because blue symbolizes life and health, and we hope that we can fight against diabetes bravely like the Smurfs fight against Gargamel. I believe that through our joint efforts, we can live happily under the blue sky, just like the Smurfs.

 

 

Hi,大家好。我是张睿,来自中国北京,我在九岁时被确诊为1型糖尿病,如今患病已经17年~
首先应该感谢我的家人和朋友。他们对我的照顾和包容,让我始终能以积极乐观的态度面对糖尿病。17年间,我将糖尿病视为我的好朋友,我认为它能带给我更自律的生活方式,帮助我抵抗住繁华世界中种种诱惑,令我拥有健康的身体和成熟的心智。


在中国,糖尿病患者超过1亿人,而其中1型糖尿病患者有将近1000万,而近几年中,据不完全统计,1型糖尿病的发病年龄有青少年化的趋势。我是9岁时被确诊为糖尿病的,发病年龄较小,深知从少年成长为青年的阶段中,糖尿病患者在心理和身体上所受的双重考验。所以我目前致力于研究青少年和青年的1型糖尿病患者遇到的医疗问题和社会问题,帮助他们更快乐和健康的生活。


我接触到糖尿病的圈子是在大二时。当时在姨父(一名糖尿病工作)的引领下,我有幸加入了北京糖尿病防治协会,认识了糖协理事长陈伟老师、秘书长何道新、糖友领袖张琪等人。在他们的引荐下,在第六届联合国糖尿病日北京站开幕式的舞台上,我发表了一场演讲,演讲内容围绕自己的患病经历。通过此次活动的契机,我得以走进了1型糖尿病患者的圈子,认识了许多患者。在此过程中,我逐渐意识到,在我们的糖尿病社区中,存在着很多血糖控制的不好,或者心态消极的患者。某种程度上,这是因为中国社会上对糖尿病群体的认知程度不够,一方面导致很多1型糖尿病人,在自我管理方面的认知程度上还不够,造成了血糖控制不理想;另一方面,1型糖尿病普遍发病年龄较小,在他们的成长过程中,会不断面临着来自家庭、学业、工作等种种社会压力,形成一种隐性的情感问题,导致他们的不自信、孤独以及对逃避人群等。


在目睹了很多因为社会身份不受认可,而产生心理问题的案例后,我决定站出来,希望能通过参与一些公众视野下的活动和宣传,提高社会对糖尿病这一群体的认知程度。尽管有很多压力,但我从未害怕过告诉别人我是一名糖尿病患者的身份。例如,2014年,我参与拍摄了CCTV《人口》栏目的“一型糖尿病患者”的纪录片:《隐藏在孤岛上的人们》。这是一档面向全国观众的节目,我鼓起勇气,讲述了自己的生活,反应了这个群体所面临的社会问题,以及遭受的心理压力,借此在节目中呼吁社会对1型这一特殊糖尿病群体的关注。同一年,我还参加由中华医学会和北京糖尿病防治协会共同举办的“北京马拉松公益跑”,希望能通过参加马拉松赛,展示糖尿病人的健康形象。我们虽然在活动中只完成短短的5km的赛程,但也成功的展现了我们努力训练的积极形象。与此同时,我还希望能通过分享我和身边杰出糖友的故事,为糖尿病同伴树立健康、阳光的形象,帮助一些尚处在自卑、自闭的病友走出阴霾。例如,我将自己的故事投稿在中国糖尿病杂志《糖尿病之友》,并很荣幸的成为了那一期的封面人物;我还与美敦力中国大区的事业部合作,通过他们的平台,像更多人分享乐观面对糖尿病的患者故事。


我和几名糖尿病患者朋友成立了一个小规模的糖尿病患者的公益团体,希望能通过患者之间的互相帮助、互相激励,增进彼此的血糖管理和心理健康。我们举办了许多场1型糖尿病患者的交流会。我们会邀请专家、糖友为大家分享一些控糖经验和方法;也会带领糖友们来到户外,进行徒步、郊游、野餐等活动。例如,2018年10月,在美丽的秋天,我们组织糖友来带北京郊区的户外进行徒步活动,并给糖友们布置了一些血糖控制和学习的问题,让大家在徒步活动中思考问题、解决问题。为了能给糖友们带来更有意义的教育和帮助,我也努力提高自己对控制血糖和糖尿病管理的知识。参加了中华医学会糖尿病学分会举办的“2016年教育管理研讨会”(2016 Annual Symposium Diabetes Education and Management of Chinese Diabetes Society),2018年还加入了血糖控制和管理的班等等。

 

 
在众多活动中,让我印象最深的是参加儿童医院组织的“青少年健康夏令营”。我以志愿者的身份参加,与来自北京、上海、香港、台湾四个地方的小糖友交流和沟通,小糖友们的可爱、天真和自强自立让我深受感动,带给我许多快乐记忆,也激励了我更好的成长。同时,通过这个活动,我认识了许多小糖友的父母,在与他们的交流中,我知道了这些父母为了让我们无忧无虑地成长,需要承担很大的压力和辛劳。从此以后,我立志帮助这些小糖友以及他们的父母,通过我成长的经验帮助他们更好的成长,缓解他们父母的压力。


我们给我们的公益团队取名为“蓝精灵”(The Smurfs),这是因为蓝色象征着生命和健康,而我们希望我们能像蓝精灵一样,共同对抗糖尿病这个“格格巫”(Gargamel)。我相信通过我们的共同努力,我们自己能像蓝精灵一样,快乐和幸福的生活在蓝天之下。

 


 

 

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