Diagnosed with Stargardt disease (molecularly confirmed) 4 months ago

Noticed difficulty with board over past year—increasing—went to local optom then referred

Never worn spectacles

Can’t see board from back of class

Faint colours are harder on the whiteboard—e.g. yellow/green harder than blue/purple

Colours OK in art

Reading OK although may be slower

Dad says turns on more lights in the home than she used to

Not aware of eccentric viewing

Year 9 at Hammersmith Academy

Favourite lessons: Science and English

Less keen on Spanish (not because of vision)

Is allowed to sit at the front of the class in all lessons

Not receiving enlarged handouts—‘managing’ although dad says she’s holding work closer

Most homework is online—zooms in on screen and can see easily

Not had any touch typing lessons but effective at typing

Not sure about career—plan to go to university?science subject

SENCo at school (Mr Jalil) is aware of vision loss and ensures she sits at front of class

Teachers are generally quite understanding although one supply teacher made her sit at the back and accused her of ‘messing around’

Has been referred to Teacher for Visual Impairment but not met them yet—first meeting next week

Walks to and from school with friends—says can cross road safely—dad agrees

Sometimes gets bus with friends—can’t always see number until close but ‘not a problem’

Mobility OK—no trips or falls

Lives with parents (good vision) and two cats in second floor flat (stairs, no lift)

No difficulty with stairs

No concerns at home. Good lighting.

Is vegan cant always read ingredients on snack foods, friends or family help

Likes indoor climbing—no problems with this—goes twice/week

Plays drums—doesn’t use music for this—no lessons/exams

Meets friends in park (best friend: Maiesha)

Watches videos on laptop (17″ screen)

Doesn’t watch much TV

Loves reading—favourite author: Malorie Blackman

Prefers to read on screen instead of paper (always has)

Uses Kindle app and library app on iPad

Not tried reversed contrast

Preferred print size is about 18 point—holds at 28 cm

Has iPhone SE for texting and calls—enlarged font, not tried reversed contrast—holds at about 10 cm

Has own laptop (17″, Windows)—manages with this although dad says gets very close

Worried about the future

Not met anyone else with vision loss

Has lots of friends and talks to family, but may like to speak to someone else about this

Use of Spectacles

No current spectacles

Wants to be able to see as well as her friends at school

Wants to be able to keep up at school

Central area ‘faint’ in each eye

Confrontation grossly full

Seeing on days out/school trips

Seeing in classroom

Binoculars

Being allowed to sit at front of class

Relay system for whiteboard

Having slides electronically ahead of lessons

Being allowed to use iPad/laptop in class

Seeing handouts

Seeing textbooks at school

Seeing faint details, e.g. on food packets

Enlarged handouts—suggest font 18+

Electronic handouts so Isabella can zoom in

+10 D hand magnifier (can see label with this)

Already referred to teacher for visual impairment

Report to teacher for visual impairment written

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  Full report of visual assessment

  
  
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  Suggest classroom help (e.g. relay); enlarged handouts (font 18+, A4); additional time and modified large print for exams; electronic textbooks

  
  
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  Explain spectacles won’t help

  
  
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  Details of follow-up appointments in low vision and ophthalmology

  
  
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  Note that Isabella won’t always make perfect eye contact (and this doesn’t necessarily mean she is being rude or not interested)

Copied to SENCo and Isabella (for her to show to e.g. supply teachers)

Given information on VICTA for grants and social activities

Given information on Stargardt’s Connected for family support

Formal touch typing training

Assessment by mobility instructor (although training may not be needed at this stage)

Was referred to ophthalmologist for registration as SI, and then referred for Low Vision Assessment.

Had a stroke 9 months ago, now discharged from Neurology clinic.

Memory is affected: forgets conversations she has had until her children remind her, forgets to take medication, forgets to turn gas hob off (no accidents, kitchen just got warmer)

Personal and family ocular history unremarkable

Any change in vision in last 3 months?

No (although it has improved from time of stroke)

Which is better eye currently?

Can’t see on right side but vision is the same in both eyes

Vision good, but only on left side. Feels can’t just look to right hand side to see things but has to turn whole body to compensate—she finds this very difficult when moving.

No problems with light, sees colour well.

No hallucinations.

Medical Secretary, but made redundant about 1 year ago (just due to reorganisation of department). Keen to get back into work but would feel ‘petrified’ to be going to a new place with new people. Feels she could go back into work if it was her old job with a building she knew, and the people she was friendly with who would look after her.

She has heard about Access to Work.

Had to stop driving because of vision problem—has informed the DVLA.

Feels she needs someone with her outdoors and they need to walk on her right side to be a buffer. This is since she went out alone and accidentally bumped into someone and they shouted at her, and this affected her confidence.

In the house, often holds out her right hand to find any walls and obstacles on the right. Still tends to walk into some door frames.

Lives alone. Could ask for help from friends and family if required (daughter lives nearby but is carer for autistic son and disabled partner; two sons live away but phone daily and visit at weekends).

Manages cooking and cleaning, but much slower and more careful. Can’t rush when moving things because has to carefully lift and then turn and then think where to put them down.

Loves reading but finds book has to be placed at arm’s length and to left side (she demonstrated and is also tilting book slightly up on left side). Sometimes finds she is re-reading a paragraph already read, so uses her book mark to move down the page to keep her place.

Walking the dog, but now can only go out if someone else available to go with her. Feels she has to look down constantly to check that the dog isn’t walking in front of her.

Used to enjoy going out with friends, but now would not even consider going out at night (in the dark).

Likes printed books, was never interested in a Kindle, or in audiobooks.

Can’t see small print (e.g. on labels)—has to pass to someone else to check.

Uses laptop and smartphone without problems—needs to position to left.

‘I feel like an invalid’ Was previously a very confident and independent person—would drive anywhere, do anything, without a second thought. ‘It’s took part of me away’

Doesn’t like being reliant on availability of other people for her to get out and about—feels it’s not fair on them either

Realises that managing her vision problems isn’t just about what help she can get, but also that she needs to ‘get used to it’

Is annoyed when she finds herself apologising when someone else bumps into her, rather than them apologising to her