I have written a blog post about hydrocephalus/spina bifida every day this week because both conditions as well as CP are ones that I have been living with from birth.
I have made a video (see this direct link to it ). I have worn yellow make up, socks and even used a yellow hair conditioning mask. Wearing yellow isn’t the only thing I’ve done to spread awareness though, I have also talked about my life and each condition as well as shared my blog and photos with Shine Charity who have helped me a lot over the years. Thanks to everyone who sent in the picture of themselves to aim to get more hydrocephalus and spina bifida awareness.
What’s always asked is what is being done throughout the world to research and treat hydrocephalus and spina bifida. Getting the right medical supplies/treatment to people is always difficult but that is what organisations aim to do. The shunt system to treat hydrocephalus is not always readily available everywhere in the world and so some children will never get one. If hydrocephalus is left untreated the outcome is death. Children die every day/year because they don’t have access to this life-saving device. In the UK, there’s a Shunt Alert Card and Shunt Passport, which I’ve talked about in an earlier blog post. If you have hydrocephalus and a shunt and want to have either of these, contact Shine Charity.
Countries like the UK, USA and Spain have specific organisations for those with Spina Bifida/ hydrocephalus and their families. Many countries don’t have this type of organisation and help available. My aim is to spread awareness about these conditions as I do daily and have been doing for the past three years so that one day hopefully most, if not all countries in the world can have better access to knowledge of hydrocephalus and Spina Bifida to be able to treat these conditions. I’m lucky as I have a shunt which controls my hydrocephalus and allows me to live life.
Shunts are devices that are badly needed in many countries and so is other medical equipment like wheelchairs. There’s an interesting petition going on at the moment and which has been going for awhile called Right Wheelchair Right Now which aims to get Wheelchair Services across the UK to provide service users with a wheelchair that really fits their needs and lifestyle . Sign the petition and find out more here
If there was more investigation into Spina Bifida and hydrocephalus then people with these conditions would have a better quality of life. There’s still not enough known about them and even now in this day and age it’s wrong that people have to fight so much to get their voices heard. As one of those people, that’s why I celebrate World Spina Bifida and Hydrocephalus Day every year, and have done since the first one in 2011.
Thanks for reading this and have a great Spina Bifida and Hydrocephalus Day if you’re celebrating!
Find out more information about World Spina Bifida and hydrocephalus Day here