Hydrocephalus and Spina Bifida Awareness Week 2018
You may be wondering what’s with all the yellow today. I’m not changing my blog colour scheme, but this week, you will see some yellow popping up now and again. Why? It’s Shine’s Hydrocephalus and Spina Bifida Awareness Week 2018.
For newcomers to my blog (welcome), here’s something you might not know about me. I have hydrocephalus. To find out more about my personal experience with the condition, you can read my post from 2016’s Awareness Week. I realise how lucky I am when it comes to medical conditions, but many are not as fortunate as me. Shine is the UK charity which supports people with hydrocephalus and/or spina bifida, so needless to say, this cause is very close to my heart. I currently may not have physical symptoms, but the mental health effects of living with hydrocephalus have had an impact on my life.
Therefore, supporting charities like Shine all year round is so important, especially as the conditions are not talked about enough. If we can use this week as a signal boost though, that will help raise awareness in a big way. The majority of people I speak to haven’t heard of hydrocephalus. Shocking when you consider how common hydrocephalus can be.
Statistics from the Hydrocephalus Association (the charity in America) show that:
“One out of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumours. Hydrocephalus is the most common reason for brain surgery in children.”
To give a brief description of the conditions, the Shine website is a great resource. Their definitions are simple, without too much scientific terminology. To quote Shine:
“Spina bifida literally means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly and may also be damaged.”
Hydrocephalus is “a build-up of fluid on the brain. Hydrocephalus can have a range of physical and cognitive effects.”
My hydrocephalus is caused by a piece of skin blocking the channel where fluid usually drains down, so I have an increased amount of fluid on the brain. This is known as obstructive hydrocephalus. In some cases, hydrocephalus and NF1 (neurofibromatosis type 1), my other medical condition, can be linked, but there’s no way of telling if this is the case with me.
I talk more about hydrocephalus and the potential treatments in my YouTube video below.
So what can you do to get involved and support Shine?
There are 2 hashtags, #GoYellow and #ShineBright18. Using them in social media posts is a great way to support Hydrocephalus and Spina Bifida Awareness Week 2018.
If you can, please donate to Shine. You can find the donation page here. I’m donating, so let me know if you do too!
Megan x
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Or alternatively, check out my YouTube video on Hydrocephalus and Spina Bifida Awareness Week 2018 too!
Whenever I hear hydrocephalus, I think of the infants with DISPROPORTIONATELY huge HEADS because that’s WHAT I OFTEN SEE in TV. I didn’t know there’s a, for the lack of better word, spectrum to it! But it makes total sense tho! And I haven’t heard of spina bifida until reading this post so THANKs SO much for sharing this, MEGAN! ? Any post that makes me more aware of things people go through eberyday are gold to me ?
Thank you so much for commenting! I totally understand. I think hydrocephalus is portrayed in the media as being mostly among children. I’m not sure how common my hydrocephalus is being asymptomatic. I’m still finding things out all the time x
I have this condition too. Thank you so much for sharing. Xx
Thank you so much for reading! We need to raise more awareness for hydrocephalus as it’s really not talked about enough. If you ever need to talk to someone who can relate to having hydrocephalus I’m always here. I’ve just looked at your blog and it’s amazing! X