Dear Jafar,
Hello! Sorry - I just posted to you on the main board, and now have seen the messages on the Australian Board too!
As mentioned to you, I have been involved with CLAN (CAH Living As Neighbours - www.cahclan.org), and would be interested in learning more about your situation, and what your main worries and questions about CAH are, and find if there are any ways CLAN might be able to help.
It sounds like your son has doctors who are managing his CAH. I would be interested to learn things like... Do you live near Amman? Do you have to travel far to see the doctors? Are the medications affordably and reliably available? Does your son need Florinef also? Do you have some reading material on CAH that is helpful for you? What are your biggest worries and concerns? What are the biggest burdens for your family? Do you know of any other CAH families in Jordan?
Please feel free to email me anytime (kate@cahclan.org). I try to come to the Message Board regularly, but I am not perfect at that!!
Kind regards to you and your family... there is a lot of turbulence next door to you at the moment, and I hope you all stay safe.
Kate.
