The story of Sheridan

Years before, I had always been excited for the final day of February – Rare Disease Day – bur after my grandmother died the year prior, Rare Disease Day 2017 wasn’t a day I would be celebrating. The night of the 27th, I went to bed feeling dizzy, with a painful headache and feeling exhausted. Over the coming days, I came to realise that I could no longer use stairs, walk off a footpath into the gutter, navigate uneven surfaces without a literal helping hand.

My headache disappeared, only to reappear during a family vacation interstate, and upon arriving home, my mother booked an immediate appointment with the optometrist as my vision was blurry and I was becoming increasingly aware of depth perception loss.

The optometrist began testing with the standard eye chart – old hat for me, never had a problem – but upon covering my right eye, we discovered the horrible truth. I literally could not see a single thing through my left eye; no outlines, no light, no shadows, nothing!

An emergency appointment with the ophthalmologist the following day confirmed the diagnosis: legal blindness, complete vision loss in the left eye.

I was referred to a neurologist and treated for optic neuritis. A series of tests lead to a MRI, another test that I am all too familiar with, and the scan showed several small lesiobs on the left side brain. In short, Multiple Sclerosis.

The reality: a lumbar puncture ordered for the following day which fortunately revealed no lesions on the spine, but the diagnosis did not change. Still blind in the left eye, no idea and no medical expertise knowing if my sight would ever return (thank goodness that it did), and now another hospital visit to begin medication administration.

And suddenly…… you’ll never be able to breastfeed due to medication toxicity to newborns, you’ll need to meticulously plan any future pregnancy as any medication remaining in your blood stream can cause miscarriage, you could relapse at any time without slightest warning, you could very likely progress, loss proper function of limbs, full control of bladder and bowel….. just what every 27 year old wants to hear!

Almost 5 years on, no relapses but I cannot forget the endless list of symptoms that I dwell on daily. I’m acutely aware and conscious of any minor change – my body overheating, my leg muscles suddenly spasming, pins and needles in my limbs and extremities. I live lucky, without progression to date, but I don’t live fearless. I’m now only too aware that I’m a double rare disease warrior – Fibrous Dysplasia and Multiple Sclerosis. That said, my deepest desire is to turn my diagnoses into strengths: I want to raise my voice for advocacy, awareness and education. And I’m hoping and praying that 2022 will be my year to speak out and make others aware of the “truth” behind my MS. I want my friends to know the “real” me, beyond face value, because I believe that awareness and understanding begin at home. My motto for 2022: Still I rise.

Life has been a constant road of ups and downs, the good, the bad and the ugly but 2022 will be my year!