What's this all about?
This idea has run on from my own blog, Let Me Live . It details the problems and hopefully some solutions to the barriers put in my way by medical, educational and other service providers. Living with Cystic Fibrosis, or looking after someone who has Cystic Fibrosis can be bad enough on its own, but when you then have to fight for every little bit of help you need, or are refused basic services, it can make life hell.
The idea of this specific blog is to pull together the experiences of as many people with CF, or carers of people with CF as possible in one place. Do you have problems with travel, getting certain drugs, sharps boxes, doctors, nurses, your child's school, university, whatever it is, it would be good to put it up here.
If you would like to be involved, please email firstname.lastname@example.org. For people who wish to be involved I will add a link to your own blog if you have one, and links to the service, such as your hospital, that you are planning on writing about, if you want them named.