IIH Awareness Month - Get Involved - Rare Illness

IIH Awareness Month

This month - The month of September - Is  a month dedicated to get as many people talking, tweeting & using social media to spread awareness about a rare illness called IIH. We also want to raise money so that more research can be done. 

 Myself and Charlotte, from Barbie Sparkles, are on a mission to get you all interacting with us via our blogs and twitter (Charlotte's links >>> Charlotte's Blog & Charlotte's Twitter) {Obviously you are on my blog! But my Twitter is Kate's Twitter} IIH is close to both our hearts & minds (literally).

Our aim:

Get everyone talking about IIH, raise awareness about IIH, raise money for the IIH charity & get more knowledge out there about this rare & sometimes debilitating illness called IIH!

What is IIH?

The proper terminology for it (is a mouthful!)

Idiopathic - Intracranial - Hypertension.

Its in the head. Not made up in the head kind of thing. NO. Its all about brain fluid & pressure.

Who gets IIH?

Well, the majority of people who get it seem to be women. However there are men & children who get this too.
Its RARE as 1 in 100,00 get it. Lucky us, right?!

When does it happen?

We don't know! That's the honest truth. A lot of us have to recognise little signs and symptoms of when our pressure has gone up. Otherwise if its too late, we could be in dire straights... Its an illness that can blind us.

Why do we get it?

Unfortunately no matter how many ideas, theories or thoughts get thrown into the hat, we don't know and have no answer from the experts. They don't know either.

This means - No cure, No specific drugs or treatment for IIH. This is why more money needs to be raised for research! We NEED a cure.

There have been theories thrown around for years. Weight, hormones, tablets... No answers though.

Where does it happen?

Ok. So it happens around the brain, under the skull. This is why it can be dangerous and eyesight threatening.

Want more info?

Basically we cannot drain our brain fluid correctly, so it builds, presses on our brains, on the back of our eyes and it just keeps creeping up and up as there is no where to release. I mean can you imagine the headache? It surpasses any migraine or headache. Not that these are to be scoffed at!!

One of my nurses called me a pressure cooker... And that Ladies and Gentlemen is what IIH is!!!! You are physically a pressure cooker inside of your skull/head!! What happens in a pressure cooker when the pressure builds, builds, builds??... BOOM!! Something has to get damaged for the air (or in our case brain fluid) to release!!!!!

The only way to release the pressure "safely" is to have it physically removed. Myself, I have had over 28 Lumbar Punctures and also take tablets. Others have had surgery or should I say surgeries!

Brain surgery isn't something you generally think about (unless its your career path!) but for those of us with IIH, its mentioned just a few times.

I'm 26, I do NOT want brain surgery. I made this decision and my consultant/consultants support me on this. For that I am grateful.

I feel I am coping rather well doing as I am... For now. None of us know what the future holds. My treatment may change in the future, but I am happy with where I am at.

I make the most of every day. I work. Yes, I get tired but I just go to bed a touch earlier. Yes, I get more headaches but that's what pain relief is for.

I could dwell on the negative points in my life; instead I choose to concentrate & enjoy the happy points.

After all LIFE IS TO LIVE; NOT TO ENDURE.

#IIHwillnotdefeatme

Guys PLEASE, PLEASE, PLEASE DO ME A FAVOUR TWEET THIS HASHTAG #IIHawarenessweek

Even if its the only thing you do! (If you don't only do this however, keep your eyes peeled for competitions on mine & Charlottes pages!)

I leave you with this:

 

Thanks,

Follow me on Bloglovin' 

Kate

XxX