I’M MOVING TO WWW.JORDANTHEHEADCASE.COM VERY SOON SO PLEASE CHECK THERE WHEN THIS ADDRESS CEASES TO WORK!
*To see the most popular posts about living/dealing with hydrocephalus, have a look at the bottom of this post where you can link directly to them*
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 seventeen 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!
When I started this blog I didn’t really have a plan for it; I was about to turn 40 and was ticking off a to-do list leading up to it. However as time went on the true purpose of the blog uncovered itself naturally; people who read it did so because they were generally also interested in hydrocephalus. Either they had it or someone they knew had it. Readers started to send me emails about the condition and lots of questions. The posts about surgeries, shunts, strange feelings in the tubing and so on started ratcheting up the view counts. So now I write it to (hopefully) try to address some of those concerns, which are exactly the same ones I had when I was first diagnosed.
In 2013 I started to collect some spare shunts to send to Vietnam after seeing a video online showing how in many countries hydrocephalus is a certain death sentence, with no treatment, surgeons or shunts available. I couldn’t get over that…how lucky I’d been to have been born with hydrocephalus here and not there. I carried on collecting shunts…then other neurosurgical equipment…and then I realised there was a lot more to do and I’d need some help to do it. So I collared two consultant neurosurgeons to help me and set up a charity, which became registered in October 2016. You can visit the website here: Action For Hydrocephalus. I did the website. For free. Using a template. Please don’t laugh at it (too much).
So this blog addresses two things now; living with hydrocephalus and the ongoing work of my charity (which is just starting out). Sometimes I write the odd post which is totally unrelated to either. I get sidetracked a little too easily sometimes (in fact it’s a wonder that this blog isn’t filled with posts about Michael Fassbender). But I try to stay on track. I hope you find some things here useful…if you have hydrocephalus yourself, take time to read the comments too; I publish all the questions that fellow shuntees ask so you may have a question you want to ask yourself all ready addressed.
Thank you for visiting and do pop back sometime. Jordan xx
*Most popular posts:
☆ You can read about what it’s really like living with hydrocephalus (lots of general topics regarding the condition covered) here..
☆ You can read about my Shunt Donation Project (now registered charity ‘Action For Hydrocephalus’) here.
The blog of George Samandouras inspired me to start mine; read his here; it’s fantastic. *update: Mr Samandouras recently made his blog private so I’m not sure it’s readable any more. I shall check with him and update the link if not.*
The main charity in the UK to help those with hydrocephalus and families affected by it is Shine UK. Look them up. They’re fab. Just click on their icon below.