My name is Warren King. I live in Australia and have just been diagnosed with CLS. What is now clear is that I had my first attack some 10 years ago but no one was able to diagnose it at the time. I have had 3 subsequent attacks with the last one just a few days ago. It also seems to me that I have been having mild leaks hroughout the period that firtunately did not develop into major attacks. In my case it seems that major attacks are triggered by a combination of long international air travel and heavy exercise activities. Does this line up with the experienec of others? I would welcome any advice or help anyine can offer. Thanks

Welcome. You will find this site very informative. Hopefully, you will find many answers. I only joined recently, and it has been so helpful to me to know that there are many other people with this condition. Also, there are people researching the condition, which will be helpful to all of us. I am not an expert, just unfortunate to have had this condition for at least 12 years. Two of my episodes were after air travel. Two were after either surgery or major illness. I do not tolerate heat or sunshine well. . People more knowledgeable than I have been very helpful to me. Mary Eileen

Many thanks Mary

Hello and welcome! am in New Zealand and have exactly the same triggers as yours. Have you found anybody to look after you when you have these episodes and what sort of physician diagnosed your condition? There does not seem to be anyone here in NZ who knows much about it. I am a chronic leaker too and have had some more serious leaks at altitude, in extreme heat and after exercise. Also after surgery and post air travel. I had started on Thephylline and Salbutamol (as Terbutaline is not available here) I had problems with it and have reduced the dose significantly. The smaller dose gives me slight relief and lessens the symptoms without the side effects. I am still trying different dosages to find the optimum one. I hope that is of some help!You can email me if you wish

Hi. am not sure how to respond directly. My condition has just been diagnosed and I am under treatment from a specialist immunoligist in Canberra. We have not set up treatment regimes etc as yet. It is very interesting to me that you seem to have the same triggers as me. I will keep you posted on what develops in my treatment.

Me email address is: sarah-foreman@hotmail.com