On June 13th, IKAHAK (Ikatan Keluarga Hiperplasia Adrenal Kongenital), the first CAH Family Club in Indonesia was established. Six families attended the . saving medications for people with Congenital Adrenal Hyperplasia. are the direct family of a CAH patient and members of IKAHAK (Ikatan Keluarga Hiperplasia. Adrenal Kongenital), a supporting group for CAH patients. Hiperplasia Adrenal Kongenital (HAK) merupakan salah satu gangguan endokrin yang dapat menyebabkan terjadinya amenore primer. Terdapat tiga fenotip.

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Neither medication was registered for sale in Indonesia, so access was variable at best – and always prohibitively expensive. Primary amenorrhea is menarche delayed at 14 of age without secondary sex or absent of menstruation at 16 of age with appearance of normal secondary sex.

Hiperplasia Adrenal Kongenital HAK merupakan salah satu hiperplasa endokrin yang dapat menyebabkan terjadinya amenore primer. Until recently, there has been no information available to families on CAH in Bahasa language, but this situation is rapidly changing! Amenore primer adalah tertundanya menarke pada usia 14 tahun tanpa disertai seks sekunder atau tidak adanya menstruasi pada usia 16 tahun dengan adanya pertumbuhan normal seks sekunder.

Category:Congenital adrenal hyperplasia – Wikimedia Commons

hjperplasia Following CLAN’s fantastic partnership with Alphapharm Australia Pty Ltd helping children in Vietnam, 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 childrenwhilst local health professionals explore local, long-term supply systems.


Obstetrics Gynaecology and Reproductive Medicine Journal, ; p CLAN is committed to working with CAH families and their health professionals over the longer term, enacting the 5 Pillars of CLAN – focusing also on education, optimal medical management, support group networks and reducing poverty. A number of small documents are now available in local language, and doctors in Jakarta have completed translation of Prof Garry Warne’s booklet “Your Child With Congenital Addenal Hyperplasia”.

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.

History of CLAN Indonesia

Abstract ABSTRACT Primary amenorrhea is menarche delayed at 14 of age without secondary sex or absent of menstruation at 16 of age with appearance of normal secondary sex. Speroff L, Fritz M, et al.


Author Guidelines pdf version. Congenital adrenal hyperplasia due to steroid hydroxylase deficiency: Their email address is ikahak gmail.

Six families attended the inaugural meeting at Dr Soetomo Hospital in Surabaya. Powered by Open Journal System 2. Three CAH phenotypes are classical salt wasting and classical simple virilizing, also non classical CAH with late onset in symptoms and diagnosis which unknown in prenatal time.

CLAN has been partnering with IKAHAK on an enterprise development program, helping families explore business ideas that will help them to one day achieve financial independence. A case 16 years old female patient came with absent of menstruation and mass near vagina as penis like.

User Username Password Remember me. Nonclassic congenital adrenal hyperplasia, International journal of pediatric endocrinology, ; Vol. Sebuah kasus seorang pasien wanita lajang usia 16 tahun dengan keluhan belum menstruasi sama sekali dan memiliki benjolan di dekat vagina menyerupai penis.

Journal of Issues in Kongenita. Amenorrhea in clinical gynecologic endocrinology and fertility, Lippincott William and wilkins, Philadelphia, ; p: