Supporting the Nephrotic Syndrome Community in Vietnam - Children's Hospital 2, HCMC

Supporting the Nephrotic Syndrome Community in Vietnam - Children's Hospital 2, HCMC

Sincere thanks to Dr Hoang Thi Diem Thuy and her team at Children’s Hospital 2 (CH2) in Ho Chi Minh City for their excellent efforts helping the Nephrotic Syndrome Community in Vietnam grow stronger. In particular, enormous thanks to Dr Tran Dong for his fantastic efforts leading the organization of the CME and NS Club meetings at CH2 – his hard work really paid off!

CLAN would also like to thank the following international experts for travelling to Vietnam and sharing their time and experience so generously with the NS Community and health professionals at CH2:

- Dr Elisabeth Hodson (Paediatric Nephrologist, The Children’s Hospital at Westmead, Australia)
- Prof Risk Kaskel (Director of Paediatric Nephrology, Albert Einstein College of Medicine, New York)
- Dr Luan Truong (Director of Nephropathology at Houston Methodist Hospital; Cornell University; and Baylor College of Medicine)
- Mr Henry Brehm (Executive Director, The NephCure Foundation, USA)
- Ms Azadeh Issapour and Mr David Cisewski (Medical Students from Albert Einstein College of Medicine)

Two key events were held at CH2 this year.

1) Health Professional Education

In the morning of Wednesday 25 June 2014 a half day CME (Continuing Medical Education) session was held at the hospital for about 50 doctors from CH2 and surrounding provences. Visiting experts gave a series of lectures on topics requested by Drs Thuy and Dong and their team as particular areas of focus viz: long term complications of the treatment of nephrotic syndrome; and FSGS.


2) Nephrotic Syndrome Club Meeting

In the afternoon of Wednesday 25 June a half day NS Club meeting was held at CH2, with 77 families attending. This was the third ever NS Club meeting at NS2, although a request for show of hands indicated that around 90% of families were attending for the first time. This year staff at CH2 had made a specific effort to invite families of children with steroid resistant NS, and this was certainly reflected in some of the questions that families shared.

Local and visiting health professionals shared informative lectures with families and families listened attentively. Dr Dong gave a terrific talk to families about basic steps they can take to improve their children’s health, including immunization against specific infections, simple dietary measures, and appropriate times to come to hospital for review. 

Dr Kate Armstrong also shared updates on the work of CLAN with NCD Child and UNICEF to develop a new chapter in UNICEF’s Facts For Life publication, and a translated excerpt from this chapter was shared with families. Families were encouraged to work together as a community to maintain efforts as a national NS Community, and the great work of NephCure in the USA was shared with families as an example of what is possible when families work together for change. Of course, families in Vietnam face specific challenges: on asking, it was helpful to learn that no families use Twitter and less than 10% are on Facebook. This speaks to challenges the NS Community will have as they grow and maintain momentum online moving forward.

As has become custom at Club meetings in Vietnam, a lively question and answer session closed proceedings. Of note, it was clear that the majority of families are now testing their children’s urine for protein at home and are now actively involved in decision making and promoting the most effective and timely management of their children’s NS. This is a very noticeable change in just a short space of time (the first NS Club meeting at CH2 was held just two years ago), and a very encouraging sign that family support clubs and education program can drive sustainable change. 

Many thanks to all for their efforts driving change for children and families living with NS in Vietnam.