So, what is IIH?

Idiopathic Intracranial Hypertension or IIH is a rare disease affecting approximately 1 in 100,000 people. No 2 cases are the same, which makes it a very complicated disability to live with. It used to be known as Pseudo Tumor Cerebri. Why? Because the condition mimics a brain tumour. So the patient has all the symptoms of a brain tumour, but with no tumour present. Instead, it’s the brain pressure being too high that squishes the brain as a tumour would.

There’s no cure for IH.

I became an advocate for IH families after I published my children’s book, Caitlin’s Wish, in 2010.  By that point,  my ex-husband had been living with IIH for 7 years. It’s as important to me today as it was back then, because now my daughter has gone on to develop the condition too.
When I published  ‘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, and I’m so grateful that it did help so many young carers feel less alone. 

I wrote this a few years ago to describe what it feels like to live with IIH …

I.I.H.
By Victoria Lewin

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!

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For more information on IIH, please go to http://www.ihrfoundation.org