Rare Disease Day

Main Photo – Elise and Emilie Liles from USA. Elise has the rare brain condition IIH and Emilie (her sister) is a Young Carer.

Rare Disease Day is celebrated every February 28th to raise awareness of the many rare diseases that change lives throughout the world. My husband was diagnosed with the rare brain condition IIH (Idiopathic Intracranial Hypertension) in 2003, and I’ve volunteered with the IH Research Foundation since 2009, raising awareness of IIH online. So,  Rare Disease Day has always given me an opportunity to share what it’s like living with IIH, but since 2016 it’s had even more meaning.

I have always had poor health but for 43 years no-one joined the dots and realized the underlying cause. The same was true for my daughter, she’d had poor health all her life but no-one figured out why until November 2016. Ironically, we were both diagnosed with the rare condition Ehlers-Danlos Syndrome, then in a cruel twist of fate my daughter has now developed chronic migraines with high brain pressure headaches (borderline IIH) like her father.

We try to focus on the positives, and both me and my daughter are writers, focusing on what we CAN do instead of what we can’t. Please take a few minutes to click on the links to learn more about EDS and IIH this Rare Disease Day. Thank you.

So what is IIH?




IH is invisible
IH is invisible


Invisible as the air you breathe,
Yet to us it’s as vivid as a fiery sunset whose ferocity knows no bounds.
Silent as a moonlit night on a desolate mountain,
Yet to us its deafening sounds torment the mind as the body writhes in agony.
Imagine a reflection of perfection in every way,
Yet lurking beneath awaits a monster as invisible as the wind set to unleash its torturous cruelty at any moment.
So, when you’re next standing in a crowd, wherever that may be,
Think about this, if disability can be invisible too…
Then it might be affecting someone right next to you.

By Victoria Lewin


Artwork by Caitlin.

The mess that is EDS!

My heartbeat sounds like hoof – beats because my stretch marks
dress me in zebra print,
Even though I stretch,
I feel like a drowsy dog who can’t bring himself to fetch.
And as I turn to look in the mirror, I’m tattooed in black and blue bruises.
Everyone sees my words as lies or excuses.
As I lay in a restraining splint, I want to sprint.
But even in my dreams, as I run, I still click and crack,
So, I lay back,
Close my eyes and see black,
Because the damage of today is a challenge for tomorrow.
The mess that is EDS!

By Caitlin.
Age 16, EDS warrior, UK.

*EDS stands for Ehlers Danlos Syndrome.*

What does life have in store for me?

With every pain and tear,
My dreams disintegrate,
They become clouded by fear.
How can life ever be normal when outwardly
I look the same as you, him or she,
but inside I’m not as you’d imagine me to be.
My body fails me day after day,
All the hopes I had, they fade away.
Will my body fail me in carrying the kids I’ve always desired?
But in having them, my one consistent dream, I could pass on my curse
and it won’t be admired.
And will I ever not be tired?
What feasible careers are out there for me?
Will I ever be independent or feel carefree?
I bear these burdens, but I smile, I don’t complain.
I silently wish for a life without pain.

Please can you spare a few minutes to watch this video and share it with your followers? We need more compassion and understanding in society for Young Carers and those they care for. By sharing the video you’ll be helping to make that a reality. Thank you so much.

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