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Retinitis pigmentosa

Retinitis pigmentosa covers conditions affecting the retina that progress slowly, over years. Two signs often characterise it: a marked difficulty in dim light and at night, then a gradual narrowing of the visual field, which tightens little by little towards the centre. Daytime and front-facing vision can stay usable for a long time.

The pace and extent vary greatly from one person to another, and nothing shows on the face. The same person can move about with no apparent difficulty in broad daylight and find themselves very hampered as soon as the light fades, which often surprises those around them.

Stepping from a sunny street into a cinema or a covered car park, and finding oneself, for long seconds, in complete darkness while others are already moving ahead: this is one of the first experiences described by people living with retinitis pigmentosa. At dusk, as the light fades, the world closes in far faster for them than for those around them.

By day, nothing hints at this difficulty, which makes evening situations hard to explain: one can come across as clumsy or hesitant for no apparent reason. Being able to set out the context once, calmly, avoids having to justify oneself every time the light is lacking.

Low light first, the field next

Unlike the idea of sight that simply "fades" overall, retinitis pigmentosa mainly affects two dimensions. Night vision declines early, then the visual field narrows, at times creating the impression of looking through a tube. In the center, vision can stay precise while the whole surrounding area has vanished.

  • Moving around in a dark or dimly lit place.
  • Adjusting to a sudden change in brightness (coming in, going out, passing under a porch).
  • Spotting an obstacle or a person outside the line of sight.
  • Keeping up with a group in the evening, outdoors, when the lighting is uneven.

What makes daily life easier

Steady, predictable lighting, along with cues announced out loud, removes most of the difficulties. Giving the person time to adjust to each change in light avoids a lot of hesitation.

  • Avoiding harsh changes in light and taking care of the lighting along walkways.
  • Describing the surroundings and pointing out steps, obstacles and changes in level.
  • Offering your arm rather than guiding from a distance in low light.

Possible accommodations

The main issue is light and anticipating one's movements, more than enlarging texts.

  • At school: a well-lit seat, instructions given orally as well as in writing and, through a PAP (a personalised support plan, in France) or a PPS (an individualised schooling plan, in France), routes and schedules that avoid passing through the dark.
  • At work: steady lighting at the workstation, an organisation that limits moving about in low light, and the RQTH (official recognition as a worker with a disability, in France) with the MDPH (the French departmental disability office) to formalise the adaptations and, if needed, the hours.
  • In daily life: light stairs and entrances generously, accept an arm in dark places, plan ahead for evening outings.

Explanations based on your profile

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Retinitis pigmentosa explained to a Child

0–12 years old

The eyes of someone who sees as if through a tunnel

Imagine your eyes are like two cameras. For some people, these cameras see well in the middle, but not on the sides, like looking through a toilet paper tube. That's retinitis pigmentosa.

This person can read their book just fine, but they don't see someone coming up from the side. It's not that they aren't paying attention: their eyes only show them what's right in front of them.

  • At night, it's even harder, everything turns dark and blurry
  • They can bump into things that are off to the sides
  • Little by little, over time, their vision narrows even more

The adults around them need to help them find their way and stay safe, a bit like a guide.

Help others understand

Living with the Retinitis pigmentosa: the context set, the conversation freed.

You write your profile just once. At every new school year, every new team, every new caregiver, you share the QR code, no need to start over from scratch. The conversation continues, it just begins from a different point.

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