Hydrocephalus Awareness: What you need to know

What is it?

Hydrocephalus is an incurable neurological condition that affects millions of people across the world. It does not discriminate. To date, the only treatment option available requires a person to undergo brain surgery (repeatedly), which is NOT a cure. The treatment options available CAN and DO fail, at any time.

Too many people around the world, including animals, are currently living with this condition and, there are no signs of it going away any time soon. The general feeling, amongst those living with the condition; is that there will never be a cure – simply because there are too many causes. That does not mean we don’t remain hopeful, even if only for better treatment options.

Sadly, I see more and more people (newly diagnosed themselves, or someone close to them), joining the support groups I personally belong to, asking the same questions. Knowing what I do now, since being diagnosed in 2007, my heart goes out to each person seeking help, advice, validation or support. For some, the journey has been “OK” (bearable even) and for others, not so much. I will never minimise anyone else’s experience as all our circumstances are different. And the way the condition affects each of us, is unique to everyone.

It’s easy to have an opinion on how others should react in each situation but, you never know how you will handle a situation until life throws a curve ball your way…

The hard reality

It’s a mixed bag of emotions and a very confusing time for all. It’s daunting and overwhelming, and it can feel like your whole world is falling apart as you instinctively travel down the rabbit hole, trying to make sense of it all, to navigate your way through. This invisible condition is not well understood by society as a whole and has the potential to leave you feeling isolated and lonely beyond imagination. The challenges and obstacles you face as a patient, for lack of a better word, is a nightmare of a rollercoaster ride. There is no easy way to deal with the effects of the condition that leaves you feeling powerless and unhinged at the best of times.

For me personally, hydrocephalus has become the bane of my existence, robbed me of so much, and continues to do so. Ironically, I feel fortunate to have made the connections that I have, because of it. Don’t misunderstand, it’s not a condition that I have a lot of love towards. It has certainly evoked mixed emotions within me, only because it has had such a great impact. But, to be kind to myself, I acknowledge that none of it is within my control.

The advice I live by and will share with you

When it comes to living with, and surviving this condition, my advice is:

• Remain as informed about your opponent as possible.
• Know your body well enough to know when something is wrong, to seek help. I have to stress; this is not something that comes easily, or a decision that’s taken lightly.
• Understand your triggers and how this condition affects you, which may not be the same as others diagnosed with it.
• Be prepared to face obstacles especially from those around you, close or not, including the medical profession.
• Never give up…

Regardless, for myself, there is nothing I wouldn’t do to survive. Personally, I have certainly gone to great lengths to get the help I need, something I would expect any reasonable person to do, should they find themselves in the same position.

Without education and awareness, society, including those closest to you, will never understand. This is why I choose to publicly share my experiences. Not for attention and certainly not for sympathy. I see this condition for what it is and the effect it has on those diagnosed with it. In this instance, sharing truly is caring – feel free to do so.

Knowledge and education gives rise to understanding and will hopefully bring about change…Empathy on the other hand is a whole other matter. Nevertheless, that doesn’t mean we shouldn’t at least try because, as a start, making a difference requires one small step in the right direction!

C. A. Marriday