As an asthmatic and one that is really really poorly controlled I would jump at the chance to take part in research/ drug trials just to see if something or anything may make a difference. Sadly there is very specific criteria you need to meet to be able to partake. Almost always you have to either not been in ITU or HDU within the year or you need to be on a very low dose or no oral prednisilone. When these categories come up I wave goodbye to that opportunity. When you have tried just about every asthma drug and even drugs not even for asthma in a bid to try and get some control you start thinking that you wouldn’t mind being a guinea pig as you have nothing to lose. I always think my asthma is pretty crap anyway things can only look up and if by chance one of these trials works then hey its worth it and if it doesn’t then I have not lost anything!!!
But my days of doing drug trials are over. In fact they never really began. I have only ever taken part in one and that was a magnesium trial called 3Mg which I blogged about. It was looking at the difference between IV and nebulised magnesium. I am not sure of the out come of it though. I know IV Magnesium works very well for me in an acute attack.
So not being able to take part in research what do you do….
I review research proposals and summaries as a lay person. This gives me the opportunity to see what research is going to be under taken but it also allows me to help make sure research is appropriate and can be understood by all. Particularly making sure the summaries of the research are understood by those who are taking part and are subjects of the research- most of these people will have little medical knowledge but need to fully understand what they are getting into.
By doing this I feel I am serving a purpose and allowing research to move forward. If there was no research then no new treatment would be developed and understanding of asthma and other conditions would come to a stand still.
Previously I thought the only way I would be able to help the cause of Asthma was by either fundraising or taking part in research but over the past 6 months I have learned that there are so many more opportunities to be involved in Asthma research and development such as a lay reviewer, or help with forums, participate in cross party group meetings. I have suffered with asthma for 28 years and you would think I would have known about the different things but I didnt. I have been a member of AUK before it even was AUK and it was the National Asthma Campaign and I was part of the Junior Asthma Club with its Desmond Dragon peak flow diary and JAC the mascot!!!!
I am so grateful and lucky to be given the opportunities I have. Even if I do get over whelmed by it all it is all worth it!
ANONYMOUS-ASTHMA 