Happy World Spina Bifida and Hydrocephalus Awareness day 2014

I was born with hydrocephalus, a condition where the cerebrospinal fluid  protecting the brain and spine builds up and causes swelling to the brain and skull. To drain the liquid, I have a shunt, which is a pressure valve in my brain attached to a tune which drains the CSF all the way from my brain to my abdomen. I cannot regulate these levels on my own, so that is why I need help from the shunt.  The shunt works well most of the time,

But sometimes it can become blocked or damaged. When this happens, I have to be operated on within four hours of the symptoms starting. My symptoms in the past were sickness, headaches, dizziness and feeling really sleepy. I'm quite lucky because I had five operations on my shunt . This might seem strange to you that I say this, but some people have had a lot more operations than I  have, and at least I had my operations when I was younger whereas  I do know some people who have had to have operations as teenagers or adults

My hydrocephalus is not cured , and never will be. I will never be able to live without a shunt . I feel really lucky that on this day I was born in, and live in a country where shunts are easily available. Some people do not get to have their shunt operation, as they die before it will happen, because the country they live in does not have the money to pay for a shunt operation, or they have to import it from another country. I can remember that Alfredo told me that back in Peru, he practically saw a little girl dying because she did not get her shunt not in time.

The spina  bifida I have is spina bifida occulta, which means  that some of the vertebrae in my soine did not form properly. http://www.shinecharity.org.uk/spinabifida/information-publications/spina-bifida-occulta

I chose to spread Hydrocephalus  and spina bifida awareness awareness not only because I have the conditions as well as cerebral palsy,  but because there are a lot of things that people do not realise about it. Just because it is invisible does not mean it is not there. My Hydrocephalus is very much still there, and I dread to think what my life would be like without my shunt. As you read this, please spare some time to think about people with Hydrocephalus and spina bifida today. 

For more  information on both conditions, visit http://www.shinecharity.org.uk