The Awareness - Report on recent CAH Club Meeting in Karachi, Pakistan
On 18th September 2013 Dr Jamal Raza along with Dr Mohsina Ibrahim and Dr Yasir Naqi Khan hosted a meeting at NICH (National Institute of Child Health) auditorium for both parents and the patients suffering from CAH. The idea was to help the parents and the children suffering understand what the disease was and answer their queries if anyone had any. The meeting was also to served another purpose that is it got the parents to meet with each other and initiate the formation of a society AWF (Atfaal Welfare Society) something similar to CLAN (Caring and Living As Neighbors) which is an international society led by Dr Kate Armstrong in Australia. Since the drugs that are used for the treatment of CAH are not registered here in Pakistan hence there availability is always a question mark and if they are available the cost of purchasing them is quite high. Even though Dr Jamal Raza and his team are doing a remarkable job to provide the medications free of cost to the needy patients who cannot afford these expensive medicines as far as possible at NICH but still many people cannot get it either because they live outside Karachi or are not aware of it.
The program started at 10am with a little entertainment in shape of a magic show for children who were there with their parents. At 11am Dr Mohsina Ibrahim briefly explained the parents with the help of a slide show as to what CAH is, its categories and how it is treated. Then Dr Jamal Raza took over and introduced us and the parents to Dr Kate Armstrong and her son Joseph who is a 14yr old boy and suffering from CAH too, over Skype. Kate shared her experience and her thoughts about CAH and CLAN who is working in collaboration with Dr Jamal to help him make the drugs available here in Pakistan. After a brief Skype chat/introduction Dr Jamal himself briefly described what CAH was to the parents. Then Dr Yasir Naqi Khan asked me to share my experience with the parents as to how different once life is if any if one is suffering from CAH like me, and to be honest it is not much different except that we have to take drugs lifelong and that most of us as adults have short heights in males and in females more masculine features except the above stated exceptions there is nothing I felt or experience in my 21 yrs of life I play study and do all the things a normal child does goes out on trips excursions with friends and family without having to face any problems. In the end Dr Jamal Raza along with Dr Mohsina Ibrahim and Dr Yasir Naqi Khan answered the questions that parents or the patient him/herself had with regards to the disease or precautions one must take in their future with respect to the disease. I would like to add the queries were addressed very professionally by all three doctors.
The meeting ended around 2pm with refreshments for the parents and children, the parents got to meet with each other and ask questions with each other as to the problems they faced with their kids and how they tackled them. Doctors got photographs taken with their patients and gave their email or contact numbers to their patients in case they have a question and cannot reach the hospital so they can get in touch with the doctor on email or phone. Parents were given a small booklet which was translated in Urdu for the patients and their parents which dealt with the subject CAH, as to what CAH is types, how to treat and what alterations to make at home if the condition of the patient gets critical and how it is carried in genes and more basic information about CAH. After the meeting one thing was sure that the parents were a lot more aware of CAH than when they entered the auditorium in the morning and many confusions were now eliminated which were there earlier.