StemCell Therapy

LAURA BAKER

Last updated05:00, September 2 2017

ULA SOLTYS

"I'm not going blind, I won't go blind" Vanessa Potter vowed as her world enclosed into a black abyss.

When British mum Vanessa Potter went blind, it took a few days before the "deep, crippling,gut-wrenching fear" kicked in.

Potter recalls now that initially, as her sight erodedinto darkness, she keptrelatively calm- partially forthe sake of her two youngchildren and her own sanity.

A flu-like illness that hadplagued her for a fortnight wasfinally beginningto lift when the broadcast producer awoke on the morning of her daughter's fifth birthday to a world that appeared darker andfuzzy.

LOUIE DOUVIS

As a rare disease attacked Vanessa Potter's optic nerve, she gradually lost her vision.

Everythingwas visibly foggy, like "TV static", and itseemed as though she waswearing dark sunglasses..

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Potter's nails were painted brightly to help her relearn what colours looked like.

Simultaneouslya "sinister" numbness creptthrough her body, starting inher left-middlefinger tip, silently moving up every limb.

"My eyes aren't right - I feel weird," she stammeredto theGP's receptionist, as she bookedan urgent appointment.

She recalls now how, to copewith the enclosing darkness, she swunginto producer mode. "Of courseI was panic-stricken, but during those first three days I was focused on getting organised, getting fixed and getting over it - the hard-hittingfear camelater."

A perplexed doctor orderedan ECG and achest X-ray, before she was sent home withanti-nausea tablets.

It tooka second visit to A&E and a steely determination tobe seen by an ophthalmologist thatsecured herahospital bed.

As the condition worsened,the numbnessominously movedinto her spine. She felt "plastic coated", her legsuseless like "frozen lumps".

"Not knowing how far it wouldgo and how deep it wouldpenetratewas quite scary," she says now.

But she was determined togriponto thesliver of vision that remained."I'm not going blind, I won't go blind," shetoldan elderly womanin the hospital ward.

Bound tothe hospital bed, she feltoverwhelminglythat it was crucial todocument the ordeal. Her husband, Ed, actedas her scribe, jottingdown every detail.

Five years later the diary has acted as the cornerstone toher book,Patient H69.

"Weirdly" shedidn't register the moment herworld went totally black."My brain hadn't caught up on the enormity of what hadactually happened."

A diagnosiscametwo weeks laterby whichtime the blindness had receded and translucent greyfigureshad begun to float into view.

Doctorssaid she hadsufferedan extremelyrareautoimmuneneurological episode, known asNMO.

The autoimmune disease had attacked her opticnervecausinginflammation and long term damage. Italso affected her spinal cord and various of her sensory reactions.

The rarity of thediagnosis earnedher areputationas the"one-in-a-million" patient, leaving doctors stumped for answers.

"The mental anguish of theunknownwas by far themost frighteningaspect, it ravaged my whole body," Potter says now.

However, she never lost her determination to fight back against the cruel disease - especially when she was assessed to be issued with a white cane.Her mantra became, "fullrecovery,no permanent damage".

"Nobody was talking about rehabilitation," she says, so she initiated her own recovery, usingsensory stimulation to reactivateher brain.

It wasn't only her vision that was damaged. Hopefulfamily and friends rubbed all manner of textured objects overher "rubber" feet, from cotton-wool balls to a nailbrush, causingalien-like sensations to shootup her legs.

To remind her brain of colour, her nails werepainted "electric blue, white and very loud pink". Laterinto herrecovery she took up paintingto furtherretrainher visual system to recognisecolour.

She had been in hospital a little more than a fortnight when a specialist declared that, "you don't have permanent damage", and sent her home.

But still facing a mammoth recovery, aNeutrogena body-wash bottlebecame herbest friend, serving as acrude test to measure her returning sight. Every morning she would stare at it ith burning intensity, willing the blurred smudge of the label to sharpen into focus.

Eventually a single letter emerged from the foggy shapes and shefelt a rush of excitment.

"Everysmallchangewasgood and therefore we labelled thewholeday as a good day.

"We weretriumphant over the smallest achievements, because collectivelythat gets you somewhere."

After six months however, progressslowed, promptinga referral to a specialist NMO team in Oxford, who dealt a heartbreaking blow - she wasn't going to recover any more of her vision.

Today she describes it as likelooking through a dusty windshield. Shelives withprofound colour loss and something called visual snow. It makes orientating herself and recognisingpeople's faces difficult.

But despite her visual impairment, her fear is gone. "I'm not nearly as scared of the world as I was. I've realised I don't have to be frightened. How I respond ismy choice."

Patient H69,Bloomsbury Publishing,$29.99

-Stuff

Read more here:
The hideous disease that stole a mum's eyesight | Stuff.co.nz - The Southland Times

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