Superficial Siderosis survival: or how to forget the elephant in the room

It's easy to talk about Superficial Siderosis like it’s some kind of abstract concept – it’s an MRI scan on a screen, it’s cerebrospinal fluid results, it’s in the title of a doctor’s letter. But it’s here, in the room, always. In an opinion piece by blogger and Silent Bleed charity member, Amanda Fearn, we look at how to turn the elephant in the room into a pint-sized figurine on a shelf - for a while at least.

Feeling overwhelmed?

Superficial Siderosis is a progressive condition and every symptom that comes along can feel like another layer of chub on the unwelcome, grey quadruped that's taken up residence in your living room.

Don't get me wrong, I like elephants - given a bowl of water, they'll get up to cute tricks and they have satisfyingly flappy ears but sat on your carpet next to the TV, they're likely to block out the sun. Whether you’re the one diagnosed or someone standing by watching, your survival and happiness depend on shrinking the elephant a little, so that you can open the window and let in some fresh air.

Dealing with your new life and the silt left behind by a prolonged bleed is challenging - whether you’re on Ferriprox or not - but the small, beautiful, meaningful things of the world that add up to more than the sum of their parts are still there.

On a good day, you'll find them. On a bad day, they'll get you through:

Laughter – way, way bigger than Superficial Siderosis. I was in a café once, and the alarm on my friend’s phone kept going off as he hadn’t heard it. Lovely people, eating tidy lunches in a quiet environment were treated to the interesting language of a well-known British DJ as the phone had been set to play random tracks from its music library. I’m sure you’ve your own stories to tell.

Vision – the practicalities of living with Superficial Siderosis can limit your physical activities and your sphere of movement but most of the people I’ve met with the condition have found creative ways of keeping their dreams and interests alive. It may be that as one door closes, another opens.

Details - sunshine, ice cream, a good comedy, birthdays, growing children, memories, new shoes: the small things are really the big things. And this applies to everyone. It's said that for the greatest proportion of human history, we lived with an intimate knowledge of a relatively small territory and just a few people. In an age of globalisation and social media it's funny to think our brains are wired this way.

Love and respect - the damage done by Superficial Siderosis to the cerebellum can affect someone’s social interactions, making relationships strained at times. A little understanding goes a long way.

Community - without supporting each other, communicating research and gathering data, we'll all be isolated, struggling with our own personal elephants. Banding together we'll uncover a cure sooner, find comfort and support for everyday life and inspire others to join the fight. One tiny elephant is no match for a band of warriors.

So please don't keep your strategies to yourself. How do you shrink the elephant on the carpet? How have you given it the push on a difficult day or talked it into a few hours on the treadmill?

Contact us or get in touch on social media.

And we can't pay the elephant to take a hike but we can donate towards medical research. The Silent Bleed is a registered charity collecting funds to help find a cure. Please give whatever you can - it's all gratefully received.

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Registered as a Charity in England and Wales since 2016

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