How has serving the diabetes cause as a volunteer changed you?

Transcription

1 Diabetes voices: How has serving the diabetes cause as a volunteer changed you? In every series of Diabetes Voices, we present individuals from all over the world who share their perspective on life with diabetes. In this instalment, three people living with diabetes share their volunteering experience in the diabetes community and how it has changed any aspect or perspective of living with the condition. For many volunteers, helping others, mentoring or working to improve the diabetes cause can boost confidence and lead to a sense of empowerment. It can have a positive effect on how they understand diabetes and its impact on the community or the world. Volunteering can also foster new friendships, expand knowledge, decrease isolation, and may even help an individual living with diabetes become more physically and mentally healthy. December 2014 Volume 59 Issue 4 DiabetesVoice 45

2 Turning the invisible into the visible It was a normal Saturday afternoon when Alexio rang our doorbell. I could hear the desperation in his voice and his heavy breathing. On the intercom I listened while he explained that he has diabetes and was feeling very ill. Over a drink of water, and while waiting for our family doctor to return my call with instructions, he told us his story. After two days without insulin, Alexio had travelled from a village about 100 km away to look for help in the capital city of Harare, Zimbabwe where we live. He had been diagnosed with type 1 diabetes eight months prior and had lost his job following a diabetes episode at work. Alexio is a single parent to two small children and does not have a job to support them and take care of his diabetes. The largest state run hospital had turned him away and told him to source his own insulin which would require him having cash. This is what led him to my doorstep begging for our help. Thanks to a request by our family doctor, Alexio was seen by a physician at the state hospital and given care for his diabetes. The Zimbabwe Diabetes Association (ZDA) gave him free insulin. My family and I continue to support Alexio with what he needs to remain healthy. I am pleased to report that he is well and his blood sugar is under control. Suraiya Essof lives with her husband and two sons in Harare, Zimbabwe. She has lived with type 1 diabetes for 24 years. Sadly Alexio s story is just one of many. He was fortunate enough to land on our doorstep and speak to me, as I have lived with type 1 diabetes for 24 years and I could easily recognise that he was suffering from diabetic ketoacidosis (DKA). There have been many similar stories in Zimbabwe but, as diabetes is largely misunderstood in our country, people with untreated diabetes are often thought to be drunk or high on drugs and turned away. Many individuals with diabetes just die unattended on the roadside. Con-men have also jumped on the bandwagon posing as people 46 DiabetesVoice December 2014 Volume 59 Issue 4

3 living with diabetes. These thieves beg for money to buy insulin and quote exorbitant prices for the insulin that they falsely require. This and a lack of education on recognising the symptoms of DKA and hypoglycaemia have led to the general public being unwilling to help. Genuine cases of untreated diabetes are sadly ignored. For me, the incident with Alexio highlighted the great need for diabetes awareness. It helped me realise how much more should be done in order to help people with diabetes and with little resources get what they need to survive. While I was sure that not enough was being done, this direct encounter definitely changed my perspective and urged me to start doing something to help. There are many other issues that affect people in Zimbabwe but, since diabetes is so close to home for me, the need to spread Alexio s story and the plight of people with diabetes like him here and all over the world became very important to me. I was diagnosed in 1990 in a small mining town in Zimbabwe. I was fortunate enough to have access to private care as my family could afford the treatment. I have since led a normal healthy life thanks to access to adequate private medical care available here in Zimbabwe. For example, there are no shortages of insulin or diabetes care products in the private sector. However, treatment requires money to buy medicine and, even if treatment is sourced through medical aid schemes, there is a cost attached to that, too. Here in Zimbabwe, we do not have fancy accessories like insulin pumps or continuous glucose monitor (CGM) devices, but we manage to live satisfactorily and happily without these luxuries. We are thankful for what we have available as we know how much worse it could be. The ZDA has worked very hard to bridge the gap between the two third worlds when it comes to diabetes care. They lead Zimbabwe and sub-saharan Africa in the fight against diabetes through sustainable education, prevention and treatment programmes. The mission of the ZDA is to improve the spiritual, physical and socio-economic welfare of people with diabetes in Zimbabwe and sub-saharan Africa. In the words of Mr Ngoni Chigwana, CEO of ZDA, the list of the ZDAs activities is comprehensive: Reinforce the case for action on diabetes. Support and strengthen ZDA provincial, district and rural diabetes healthcare education centres. Improve the health outcomes of people with diabetes and prevent people with diabetes from developing complications. Prevent country escalation of type 2 diabetes. Champion a country free from discrimination and stigma to people with diabetes. Build effective partnerships to maximise the outcomes of the UN Political Declaration on NCDs including diabetes. Ensure the effectiveness of ZDA country organisation on the implementation of IDFs Life for a Child programme. As well as providing free insulin, the ZDA provides free blood glucose monitors and blood glucose testing strips, as well as offering free HbA 1c and kidney function testing. It is also working on getting an ECG machine. In Zimbabwe the main challenge continues to be strengthening diabetes awareness. The ZDA needs funding for better awareness campaigns, and to uplift its image and exposure to the public. Since my meeting with Alexio, I have since been volunteering my time at the ZDA by spreading awareness over various platforms especially through free social media. December 2014 Volume 59 Issue 4 DiabetesVoice 47

4 Carrying the torch for diabetes Although living with diabetes can be challenging at times, I have found that volunteering for diabetes offers a positive experience, even though it comes out of a difficult situation. Volunteering within the diabetes community can be rewarding, can make a difference to others and is something that I greatly recommend. Put simply, the act of volunteering has had a lifechanging impact on me, and the way I view my diabetes. I think there is a volunteering role out there to suit everyone s interests, and my varied volunteering experiences are an example of this. My voluntary Melanie was featured in the UK Independent newspaper as the Diabetes UK Media Ambassador roles have ranged from speaking about the positive side of living with diabetes in the national press, TV and radio to helping facilitate short breaks for families and children with diabetes. I enjoy spending time with other volunteers, working together to achieve the goal of making things better for others. Volunteering has helped me develop better skills of communication too, whether that s speaking to government ministers about healthcare or giving presentations about diabetes. In 2012 my volunteering contributions led me to the opportunity of carrying the Olympic torch, thanks to Diabetes UK s nomination, which was an amazing chance to put the spotlight on my other passion, participating in sport whilst living with diabetes. Volunteering has enabled me to make new friends and network with others throughout Europe, whether that be as a representative in the Diabetes UK Young Leaders Action Group or through the delivery of keynote speeches on diabetes in other countries. These experiences have been a great opportunity to share knowledge and expertise in living with type 1 diabetes, which has also helped me enrich my own diabetes knowledge and the way I view my diabetes care. I truly believe that when people with diabetes come together, something amazing happens. When people who have never met before, meet and find they have something in common, it can feel like being a part of a special community. Melanie (centre row, third from right) is photographed at the Diabetes UK Cymru family event at the Welsh Institute of Sport in Cardiff in September Melanie Stephenson, 26, is a professional athlete and a diabetes youth advocate. Currently, she is Media Ambassador and Young Person s Project Leader for Diabetes UK and has an active role as a presenter for JDRF. She lives in Cardiff, Wales, UK. 48 DiabetesVoice December 2014 Volume 59 Issue 4

5 The power of volunteering Working as a volunteer is something that I do with passion, enthusiasm and dedication. I have been living with diabetes for 33 years and actively working as a volunteer for more than 15 years. Instead of describing my experiences with volunteering over that decade and a half, I would like to focus on the reasons why I still love volunteering for diabetes. I am working as a volunteer because I want to help others. I truly believe that my work as a volunteer has made, and will continue to make, a difference to the lives of other people living with diabetes. This is through direct contact with individuals in multiple activities as a fellow participant such as diabetes summer camps, peer-to-peer education and campaigns or as a result of the lobbying activities in which I am involved. Working as a volunteer has given me so much! To feel that I had the chance to touch a person s life in a positive way is the most rewarding for me. It fills my soul with joy, happiness and builds my self-esteem. Another positive aspect for me is the enhancement of my diabetes control. Since I became more involved with diabetes associations my diabetes has improved a lot. Working together with youngsters made me look at diabetes with different eyes. I worked on the first summer camp of the Portuguese Diabetes Association (APDP) as a camp leader and since then I got deeply involved on APDP activities. Among other activities, I have created two associations in Portugal and over the last few years and have João and Europe Region Portugal representatives of the IDF Young Leaders in Diabetes Programme (YLD). been involved in political lobbying activities at the national and European level. From my experience, I can say that politicians tend to listen more when people with diabetes are involved. We have huge power in our hands, but sometimes people with diabetes don t know it. Currently, I am the President of IDF Europe, a position that I hold with passion and commitment to people living with diabetes, parents and healthcare professionals. Working as a volunteer is a part of me. I am sure that this is something that I will do forever. I would like to invite all of you to try working as a volunteer; you will see that you will be helping others, but you will be helping yourself as well. João Manuel Valente Nabais is President of the International Diabetes Federation, Europe Region (IDF Europe). João was diagnosed with type 1 diabetes in In addition to the many activities he mentions in this article, he is a member of Diabetes Voice s Advisory Group providing valuable insight into the contents of the publication from the perspective of a person living with diabetes. December 2014 Volume 59 Issue 4 DiabetesVoice 49