“Life is rarely white or black” – poem for Rare Disease Day

Rare Disease Day, on the last day of February, aims to raise awareness for patients, families and carers around the world that are affected by rare diseases.

In recognition of Rare Disease Day today, Henshaws ambassador and poet Dave Steele has written a poem to spread awareness of his own rare condition, RP:

“They say I’m 1 in 4000

and what I have is rare.

No treatment or a cure as for this blindness I prepare.

But to look at me

you’d think I see

as well as most of you.

For behind my eyes

a condition lies

that most won’t have a clue.

Quite often I’m misunderstood,

At times I’ve been accused.

Those people just don’t get it

as my shins and soul get bruised.

The things they take for granted are for me a task to take.

They say “I don’t look blind”,

so then these symptoms must be fake.

We need to raise awareness of these conditions that are rare,

There’s more to disabilities than the sign with a wheelchair.

A need for education so no longer we’re held back by all those misconceptions life is rarely white or black.

So if you’re like me and what you see is more a shade of grey,

Show your support and change their thoughts for World’s Rare Disease Day.”

Brilliant poetry from Dave! If you want to read more, Dave recently shared a poem with us which available on our blog at henshaws.org.uk/blog/constantly-adjusting-life-with-rp and his third ‘Stand by Me RP‘ book is now out on Amazon.

For more support and information on different eye conditions, visit our resource page at henshaws.org.uk/eye-conditions.

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