A new Lupus Club for children in Vietnam - 3 July 2014

A new Lupus Club for children in Vietnam - 3 July 2014

In 2013 CLAN (Caring & Living As Neighbours) was asked by health professionals at the National Hospital of Pediatrics (NHP) in Hanoi to collaborate with them on the launch of a new family support group for children living with Systemic Lupus Erythematosis (SLE) – otherwise known as “Lupus”.


The need for a Lupus Club in Vietnam stemmed firstly from their relatively large numbers of affected children – estimated to be around 160 children presenting for treatment at NHP at the time (by comparison a leading pediatrician at The Children’s Hospital Westmead (CHW) – one of the largest children’s hospitals in Australia – would estimate the comparative number treated there to be around 10 or less).  Secondly, Lupus can be a difficult condition to manage, with very severe complications when not treated appropriately. In Australia 10-20 years ago the mortality associated with Lupus in childhood was around 90% - fortunately the situation has now greatly improved for children in Australia, with around 90% of children now surviving at 10 years. Doctors in Vietnam are keen to achieve similar outcomes for their patients.

For these reasons, CLAN was proud to support the launch of the inaugural Lupus Club in Vietnam, held at NHP on 3 July. With 105 families attending (66% of all Lupus families in North Vietnam!), it was a remarkable event and indeed was made even more special because of the people who attended. CLAN was privileged to have the support of the Australian Ambassador to Vietnam, His Excellency Mr Hugh Borrowman, who was accompanied by his wife and son Saul. The presence of the Ambassador and his family sent a strong message to families and health professionals alike that their efforts for the children were of great interest and importance to the Australian Department of Foreign Affairs (DFAT), and CLAN would like to express our sincerest thanks for this strong support.


Also present at the launch of the Lupus Club was the Director of NHP, Prof Hai, and Vice Director Dr Huong. Visiting from CHW, Australia and providing some educational talks for families was Dr Elisabeth Hodson; and Dr Luan Truong, a visiting renal pathologist from the USA also attended and supported the meeting.


Once families had completed registration and received all relevant paperwork (educational resources and also a survey that will assist NHP to conduct a basic health needs assessment relating to Lupus in Vietnam), the Lupus Club meeting commenced with some musical entertainment. Nurses from the Nephrology Department of NHP joined in the singing. One of the opening songs was a rousing traditional Vietnamese song with lyrics “don’t ask what the Motherland can do for you, ask what you can do for the Motherland”. Flute played a beautiful traditional Vietnamese song that calls people back to the village, where the rice grows and enjoy life in rural areas.


Prof Hai gave an opening address, acknowledging the fact that a lot has been achieved with family support Club meetings for other conditions in Vietnam. For example, three years ago 90% of families of children with Nephrotic Syndrome (NS) did not test their children’s urine for protein, but now 90% of families do test urine, and this is having a major impact on their capacity to optimally manage NS and improving their children’s health outcomes.


His Excellency Hugh Borrowman spoke next. The Australian Ambassador thanked CLAN (a proudly Australian NGO!) for their efforts supporting children in Vietnam. More poignantly, he also spoke passionately and from the heart about his own experiences as a parent (two of his three children are living with chronic health conditions) and affirmed the central role of parents in caring for children with Lupus and other chronic health conditions, and helping them enjoy the highest quality of life possible. His Excellency encouraged parents to learn all they could and feel confident and strong in their ability to care for their children.


Prof Tran Dinh Long, Head of the Pediatric Nephrology and Urology Society of Vietnam was invited to speak after the Australian Ambassador, and spoke to a range of issues and challenges facing children living with Lupus in Vietnam. Dr Kate Armstrong briefly introduced CLAN to families after Prof Long, and encouraged Vietnam’s new Lupus Club to connect internationally with the broader Lupus Community. The current use of #LHandSign to connect the Lupus Community online was shared and the entire audience happily raised their right hands and gave a rousing #LHandSign for Lupus in Vietnam. A request for a raising of hands to indicate who is using Facebook suggested about 30% of families might automatically be able to start connecting that way. Kate also encouraged the incoming Lupus Club Executive to connect with Mr Doan (President of the Duchenne Muscular Dystrophy Club and present to support the launch of the Lupus Club), and learn from the achievements to date of the NS and DMD Clubs.


Dr Elisabeth Hodson followed the introductory talks with a more detailed lecture on Lupus, and families were clearly keen to take in all the information she shared. Lupus is not as common in Australia as it is in Vietnam, and yet the very encouraging transformations in patient care and prognosis for children living with Lupus in Australia over the last 20 years greatly encouraged the families. In addition to the talks on Lupus, families also received a newsletter from CLAN with some educational material, as well as some translated educational resources on Lupus that were translated by the staff of NHP. CLAN would particularly like to acknowledge the generous assistance of Prof Rick Kaskel from the Albert Einstein College of Medicine for helping identify useful resources on Lupus for the families.


After a busy morning session, the Australian Ambassador took his leave for another appointment. CLAN was thrilled to introduce His Excellency to Mr Doan, the President of the Vietnam Duchenne Muscular Dystrophy Club at this time. Doan thanked the Australian Ambassador for the generous support of his Embassy for DMD and OI Club activities (CLAN received a grant from the Australian Embassy to run capacity building activities for the DMD and OI communities), and presented the Ambassador with a beautiful framed artwork with CLAN’s logo on it. In recognition of the support received.


As the Ambassador and his party departed there was a throng of media – thanks in large part to the wonderful work of Ms Vu Thi Binh Chau, Media Officer with the Australian Embassy team. In total there were about 10 media outlets in attendance, and the Australian Ambassador, Dr Kate Armstrong and Mr Doan were all interviewed by various newspapers. KA was also interviewed by O2TV and VTC Share Vietnam, a prestigious programme on Vietnamese television that provides insights into key topics of national interest.


Around 11:30am the Lupus Club broke for lunch (an opportunity for families to mingle and get to know one another more), and started again in earnest in the early afternoon following more musical entertainment. In addition to another presentation by Dr Hodson on Lupus, Dr Huong presented an overview of Lupus in Vietnam, and Mrs Ha (a nurse in the Nephrology Department) gave a talk on practical steps families can take at home to care for their children.


Question and Answer time is always a favourite time at Club meetings – families rarely have time enough with health professionals to have all of their queries answered in crowded outpatient clinics – and today was no exception. The Q&A session went for about an hour, with questions ranging from: risk of Lupus occurring in siblings; cause of obesity in children with Lupus (side effect of Prednisone therapy); appropriate use of sunscreen; whether it is ok for children with Lupus to exercise (yes!); use of traditional medicines; various complications of Lupus (different families queried eye, skin, renal, and circulation queries in the main); and prevention of relapses.


The Inaugural President of the Lupus Club spoke after many questions had been answered, and started by thanking everyone for sharing their knowledge about Lupus and its management with the families. The President told his fellow club members that he comes from a rural area, and is a farmer by background, so often finds it hard to learn as much as he would like about Lupus, In addition, he acknowledged the financial and emotional toll that Lupus takes on families, especially when the condition is more severe. He thanked doctors for allowing families to come together, talk amongst themselves and share stories and information with one another, and wished everyone good health and happiness.


Dr Nam (Vice Director of NHP’s Nephrology Department) closed the Club meeting with a speech thanking everyone for their involvement, and then invited a large cohort of children to come forward in turn for awards for excellence at school. He congratulated the children on their excellent study results despite the challenges that living with Lupus can present. The children proudly gave a #LHandSign for Lupus awareness as they received their awards - and in fact the entire community then came forward for a group photograph to mark the occasion!


CLAN would like to thank everyone involved in helping to take this first significant step forward in the care and management of Lupus for children in Vietnam. We are confident that ongoing collaborative efforts will see the future mortality and morbidity associated with Lupus in Vietnam approach that enjoyed by children and families in Australia.