So, what is IH?
IH is a rare disease affecting approx. 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.
My husband was diagnosed with IH in June 2003, after suffering symptoms since late 2002. 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.
Here are a few of the IH awareness Videos I’ve created over the years… please share to help raise awareness of this cruel condition, thank you so much.
For more information on IH please go to http://www.ihrfoundation.org
By Victoria Lewin
Excruciating headaches torture every second, as their vice like grip tightens evermore.
The IH spear pierces your eyes which are ever so swol-len 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!