WHERE WE WORK: INDONESIA
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With partners in Surabaya, East Java and at Cipto Mangunkusumo General Hospital in Jakarta, CLAN is thrilled to be involved in some fantastic community development work that is unfolding in Indonesia for children living with chronic health conditions.
Sincerest thanks to all of our partners in Indonesia for allowing CLAN to partner with you in this way.
Sincerest thanks to all of our partners in Indonesia for allowing CLAN to partner with you in this way.
Congenital Adrenal Hyperplasia
Thanks to an email introduction from the CARES Foundation in September 2006, CLAN was able to help caring health professionals in Surabaya, East Java secure emergency supplies of hydrocortisone and fludrocortisone for their small group of CAH patients. Neither medication was registered for sale in Indonesia, so access was variable at best - and always prohibitively expensive.
Following CLAN's fantastic partnership with Alphapharm Australia Pty Ltd helping children in Vietnam (since 2005), we were keen to explore another opportunity to collaborate, and were delighted when Alphapharm generously agreed to donate a two year supply of Hysone tabletes (hydrocortisone) for every child with CAH in Indonesia (approximately 200 children), and this freed local health professionals to explore long-term, sustainable supply systems. Of note, affordable access to hydrocortisone has since been achieved (please see story here).
On 13 June 2007 IKAHAK (Ikatan Keluarga Hiperplasia Adrenal Kongenital), the first CAH Family Club in Indonesia was established. Six families attended the inaugural meeting at Dr Soetomo Hospital in Surabaya. IKAHAK welcomes contact from all CAH families of Indonesia. Their email address is [email protected].
In 2008 a national CAH community was established in Jakarta, under the leadership of Dr Aman Pulungan (Chair of the National Indonesian Society of Pediatric Endocrinology (ISPE), a chapter of the Indonesian Pediatric Society).
Over the last decade CLAN has committed to collaborating with CAH families and their health professionals in Indonesia to enact all 5 Pillars of CLAN - focusing also on education, research, advocacy, optimal medical management, strengthening family support group networks and reducing poverty.
Targeted educational resources on CAH are now widely available to families in Bahasa Indonesian, with a number of locally developed resources (written and video format) in local language shared with families at regular KAHAKI and IKAHAK Club Meetings.
CLAN has also partnered with IKAHAK on an enterprise development program, helping families explore business ideas that will help them to one day achieve financial independence and this shows enormous promise for other communities CLAN works with.
The future for CAH families in Indonesia is looking brighter all the time, and sincere thanks must go to the fantastic Indonesian doctors around the country who are working so hard to effect change, and the courageous families who strive above and beyond to help their children achieve the highest quality of life possible.
If you would like to support ongoing efforts for the CAH Community of Indonesia, please visit CLANinIndonesia.gofundraise.com.au
If you would like to connect directly with the CAH Community of Indonesia please contact [email protected]
Useful links:
Our team at CLAN is proud to introduce our CAH books for the adolescent girls written in Bahasa.
The stories in this books came straight from our patients and highlights the psychological and medical problems faced by adolescent girls and young adult women who have CAH in Indonesia.
Osteogenesis Imperfecta
2017 was the year Indonesia celebrated a new generation of walkers!
This special report by Jo Freeman and Dr Aman Pulungan speaks to the incredible change being driven by caring doctors, committed families, generous sponsors and passionate supporters, all working together so #EVERYchild in Indonesia might enjoy life to their fullest capacity!
Celebrations for Wishbone Day, an international day of awareness for Osteogenesis Imperfecta (OI), have come and gone for another year in Jakarta.
FOSTEO, the OI community in Indonesia held an eye-catching and fun event that was featured on a ‘breakfast TV show’ called Selamat Pagi Indonesia (Good Morning Indonesia) with nearly 30 minutes of live footage and interviews being broadcast. The audience appeal of the coverage was further enhanced with guest Wishbone Day (WBD) advocate, model and actress, Sandra Dewi (pictured below with FOSTEO Community members). The motto of WBD, ‘because awareness makes a difference’ highlights the value of engaging those outside the OI community who may not know how the condition affects people. Therefore, it was important that the event reached a broader audience than those directly involved and affected.
Wishbone Day Jakarta 2017 was held on Car Free Day in order to gain additional exposure from all the regular exercisers who were able see our activities as they ran/cycled/roller-bladed past. Car Free Day is a weekly event in many Indonesian cities whereby a main road is closed off for exercising on Sunday mornings. Originally started to address pollution, Car Free Day is now an excellent opportunity to promote health and community activities to help tackle Non-Communicable Diseases (NCDs). Passers-by could observe a large banner above the stage and a large crowd of yellow-clad people participating in Zumba dance, original poetry readings and discussions about topics such as difficulties in accessing medication and equipment.
A special highlight of the day was the demonstration of new, affordable, child-size walkers that were constructed by Mr Jo Freeman, a young intern working with the Indonesian Paediatric Society and CLAN, thanks to support from the Australian government's New Colombo Plan. In communication with FOSTEO members ahead of Wishbone Day, Jo learned that families were keen to access affordable mobility aids for their children. After communicating with Jo Ragen and the team at Wishbone Day, Jo Freeman was able to access detailed instructions on how to build some cheap, yet safe and sturdy walkers. These new (yellow!) cost-effective walkers were an exciting development for the FOSTEO Community, with the need for mobility aids an exciting reflection of the new generation of children living with OI in Indonesia, now increasingly mobile thanks to the excellent health care and affordable essential medication now available to them.
Wishbone Day 2017 was a huge success. Wishbone Day was founded with the idea that assumptions about what OI is and isn’t often create more problems than the disease itself; that OI is one of the hurdles of life which adds to the adventure; and that the lives of OI patients will be better when we – the wider community - know better. Since their inaugural founding meeting in 2012, FOSTEO has taken OI from relative obscurity in Indonesia, to a series of expertly organised community events drawing national TV coverage. Accordingly, high childhood mortality and morbidity associated with OI in Indonesia has decreased remarkable - to the extent FOSTEO is now registering an increased need for child-sized mobility aids! The OI community in Indonesia should be exceedingly proud of what they have achieved and spirited for the future.
The success of this event was due to contributions by Alumni Pricewaterhouse Coopers, LCJM Kalingga, UBAM Community Malaysia, PANASONIC, Bebelac, Prodia, Kalbe nutrisi, Frisian flag, Danone, Gracia, and all those who participated in Wishbone Day Jakarta 2017!
If you would like to connect directly with the FOSTEO Community of Indonesia please contact [email protected]
