IIH is an invisible neurological (brain) illness where the person looks “fine” when they are not!  My daughter started with symptoms of IIH in 2018 (and before that, her father had been diagnosed with it in 2003 when she was just 2 years old).
The original Caitlin’s Wish books (2010 and 2012) were based on our lives when my daughter Adele-Caitlin was a little girl struggling to come to terms with all the changes in her life, and in a cruel twist of fate, she went on to develop the rare brain condition herself as a teenager.
That is why raising awareness of IIH and IH is so important to me – it’s personal! 

SO WHAT IS IH?

“Intracranial hypertension”(IH) literally means that the cerebrospinal fluid (CSF) pressure within the skull is too high. Old names for IH include Pseudotumour Cerebri (meaning false brain tumour) and Benign Intracranial Hypertension.

Chronic Intracranial Hypertension (IH) is a serious neurological disorder that can cause severe headaches, vision loss, blindness and life-altering disability.

Anyone can develop chronic IH at any time in life.

Currently, there is no cure.

Most people have never heard of it, including many in the medical profession.
If more people knew about IH, then patients might get treated with the compassion they deserve!

IH is sometimes caused by an existing medical condition, but it often occurs without a known cause. Idiopathic IH (IH that occurs without a cause) is considered a rare illness affecting 1 in 100,000, though the rate of incidence is as high as 1 in 5000 for some people.

Millions of other people have a condition or disease such as traumatic brain injury, stroke or kidney failure, in which IH can play a role.
There has never been a drug specifically developed to treat IH.
Treatment options are limited. For some people, medication can help control intracranial pressure. But for others, the only choice is painful surgery to insert a shunt to drain the excess fluid from the brain. Since shunt surgery only has a 50% success rate, this frequently means many surgeries, with the accompanying risks. If sight is at risk, a person with IH often has to undergo optic nerve surgery to save their vision.

IH symptoms include:
Severe headaches (as if your head is in a vice),
Vision loss and/or blindness,
optic nerve swelling,
Pulse – synchronous tinnitus,
Sore/ stiff neck,
Back pain,
Memory/ cognitive problems,
Fatigue,
Malaise,
Dizziness,
Light-headedness,
Photophobia,
Noise sensitivity.

Chronic IH is life-altering and robs people of their once happy and healthy existence. No two cases are the same, making it a difficult condition to manage.
For more information on IH, please go to the IH Research Foundation. http://www.ihrfoundation.org

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I have spent the last decade devoted to raising awareness of IH and trying to help the IH community as much as possible. When I published my first book, ‘Caitlin’s Wish’ in 2010, it was with the intention of helping children (young carers) affected by IH, just as my own children had been affected all those years earlier. I just wanted to help…as simple as that!

Nowadays, my own health limitations mean that I’m unable to raise awareness like I used to, so from now on, it’ll be through my writing whenever the opportunity arises.

A few years ago, I wrote a children’s story for a dear IH friend of mine who was struggling to explain IH to her young children. Her neurologist suggested that she use the analogy of having a tiny elephant in her brain, and bingo, Idris the Hippo was born. Idris the Hippo. helped her children, so I’m sharing it with you, too.

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Here’s an example: a poem I wrote for Rare Disease Day a few years ago…

I.H.
By
Victoria Lewin

Photograph – Elise Goetzinger & her sister Emilie Liles.

Excruciating headaches torture every second, as their vice-like grip tightens ever more.
The IH spear pierces your eyes, which are ever so swollen and sore.
Vision eludes you, seeing double or blurred,
Until it affects you, IH sounds absurd.
Sunlight, whose arrival was once adored,
Now meets dread, and is thoroughly abhorred.
Its bright glare leaves you running for cover,
Searching for a shady place unlike any other.
Whooshing drums thud in your ears,
Drowning out the sound for years,
Driving you crazy every day,
With its refusal to go away.
Swirling rooms sway from side to side,
Rocking amidst vast oceans on a stormy tide.
Bilious tummies contend with endless malaise,
On this IH voyage, where no one had a say.
Aching bones and searing pain, perpetually tired with relentless fatigue,
Which hovers around you in its own league.
But although IH has stolen so many parts of my jig-saw,
I won’t let it beat me, not anymore!