Here We Go!

My name is Tassia and I never thought I would add the words BLIND and FIRST TIME MARATHON RUNNER to the long list of words to describe myself.

The Sad Part...

In February 2019 when I was 26, at a simple eye test for some new glasses, the optician noticed a haemorrhage behind my left eye and suggested I see my GP.

The haemorrhage was in fact unimportant and had healed by the time I got to Moorfields Eye Hospital some months later.  Luckily they suggested several further tests which revealed that I was losing vision in my left eye.

Over the following year my left eyesight slowly disappeared. Then the vision in my right eye suddenly went in a matter of days. Scary times! 😱

No-one could understand why, so a battery of assessments and long waits for results began.

5 MRI scans, 1 PET scan, hundreds of blood tests and eye tests, and one lumbar puncture later (ouch! big needle! 💉) it was still unclear what the root cause was.

During the height of lockdown I spent 10 days in intensive care for a full plasma exchange (expletive ouch)! Big needle in the groin for 10 days! It was a really painful procedure and in fact totally unnecessary - wrong diagnosis yet again.

Finally some genetic tests revealed that I have a rare mutation of a rare genetic disease known as LHON which results in the loss of central vision – the vision we all need to read, write, drive, see the people we care about, and avoid dog poop 💩 on the pavement.

The Happy Part

2 years down the line and I can say that I am now an expert with a white cane! 👩🏻‍🦯

I ski with my ears but not my eyes; I run with my brother but not alone and I talk to my phone which connects me to all sorts of things. I have continued painting, pottery, calligraphy, spinning, yoga, swimming. I even manage to cook without burning the house down (well, I was never a fan of gas hobs!)

My vision may have gone but I now see differently – and that has been with the help of the RNIB.

RNIB and Me

I contacted the RNIB soon after my diagnosis and enrolled onto their Learning to Live Well with Sight Loss course which they continued to run by phone during lockdown.

They have helped me with assistive technologies for both my phone and computer, and provided talking books and extensive materials for learning Braille.

RNIB has given me lots of practical day-to-day advice which has helped me feel less excluded and to live independently, for which I am very grateful.

So Now!

I want to express my gratitude to the RNIB by running the London marathon as a fundraiser for them.

This would not be possible without my amazing brother Max running at my side – we will be tethered together! 🏃🏻‍♀️🏃‍♂️

So please please, PLEASE – dig deep into your pockets, bank accounts, piggy banks, and other hiding places and donate donate DONATE!

The RNIB needs your support to continue helping the visually impaired and blind.

Love, Tassia ❤️