I have hydrocephalus. You may have heard of it. It’s basically an annoying condition where your brain is unable to drain brain fluid on its own (the way that ‘normal’ brains can) which leads to increased pressure and, if not treated, disability and death. I’ve had it for fourteen years and in October 2013 I had my twentieth brain surgery. When you have hydrocephalus, you get used to having only half a head of hair!
Last year I started this blog to cover my 39th year and my equivalent of a ‘Bucket List’ (instead of a list of things I wanted to do before I die, it was a list of things I wanted to do before I turned forty. It was an ‘F’-List, the ‘F’ for forty replacing the ‘B’ for bucket!). One item on this list, Number Six, was the most important to me; to start a project encouraging hospitals and neurosurgeons to donate unused or recently expired shunts (the life-saving devices used to treat hydrocephalus – I am on my third) to developing countries where shunts are hugely expensive or simply not readily available. This project is a MAHOOSIVE amount of work and it quickly took over my F-List; some items I was able to tick off before I turned forty in October; other items I haven’t ticked off and will have to wait. I have decided to focus this blog for now on the donation project and to the subject of living with hydrocephalus (giving the truth, not the textbook version so often told to patients by well-meaning doctors). If you have any questions, please ask. If you have any spare shunts, please donate.
☆ You can read about my Shunt Donation Project (no. 6 on the List) here.