CAH small group meetings in Indonesia! (one-year plan)

CAH small group meetings in Indonesia! (one-year plan)

A report by Melissa Morales, CLAN Intern, 2016

I recently had the privilege of interviewing Dr. Agustini Utari, pediatric endocrinologist, from Indonesia. We spoke about the work she and a team of doctors are doing in the CAH community there. The team in Indonesia is developing a plan for small groups of families with children affected by CAH to meet in a more personal setting. 

There has been group meeting within the support group, KAHKI, in Indonesia, but many parents wanted to get to know one another more personally to share and learn form the experiences of others. Dr. Agustini and the team saw the need for personal support in the CAH community and began developing a one-year plan.

From the original support meetings,” a group of 5-6 families gathered to share stories and information”, said Dr. Agustini.  The second meeting will be in October, and will hopefully be able to will provide parents with a DVD of a video “to avoid group members from becoming bored with the education”. The plan is for the third meeting in January to educated parents and teenagers about the changes that will occur during puberty. After 1 year, a plan to make a bigger meeting will be developed; the bigger group will probably have a different education approach.

It is important for doctors, families, and children to come together to support and learn from one another in the journey to thriving while living with CAH