#nystagmus — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #nystagmus, aggregated by home.social.
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I've recently been made aware, and had to confirm it actually, that today is international nystagmus awareness day. This is part of my eye condition, but tbh, it's a big nothing burger compared to the rest of it. My eyes jump around a lot less than they used to when I was a child, but even then, it really didn't impact my life except for a few small ways. Namely, looking through optics. Examples include rifle scopes, telescopes, monoculars, microscopes, binoculars, etc.
The involuntary eye movements would make it difficult to focus overlong on the viewable area, and I'd see a lot of black when they moved.
I guess my question is, if Nystagmus is a thing for you, has it significantly impacted your life? Maybe it's worse if you have no other visual disabilities?
#blind #nystagmus -
Richard Osman Shares How Health Issues Shape His Work
https://newsletter.tf/richard-osman-health-career-writing/
Richard Osman talks about his lifelong health problems like nystagmus and how they affect his TV shows and book writing.
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Richard Osman's Health Conditions Influence Career Choices and Creative Process
https://newsletter.tf/richard-osman-health-career-writing/
Richard Osman's health conditions, including eye problems, have influenced his career choices, leading him to focus more on writing.
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Richard Osman Shares How Health Issues Shape His Work
Richard Osman, known for 'Pointless' and his books, has shared that health issues like nystagmus, which affects his eyes, and past kidney stones have changed how he works. He finds writing easier than some TV tasks because of his vision.
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Carmarthenshire mum says Guide Dogs support was a ‘lifeline’ after baby son diagnosed with albinism
Chloe Davies, who now lives in Neath Port Talbot, said she was “consumed by worry” after her son Louie was born just after Christmas 2024 with albinism, a rare genetic condition that can cause significant sight loss. Louie, now one year old, attends Guide Dogs Cymru’s My Time To Play sessions in Gowerton, which support young children with visual impairments and offer parents a vital support network.
A difficult start and months of uncertainty
Chloe said she realised something was wrong almost immediately after Louie’s birth, when midwives raised concerns about his unusually white hair and the possibility of albinism. After a stressful delivery and a week in hospital, she returned home feeling overwhelmed.
Louie shortly after birth. His family say the weeks that followed were filled with uncertainty until they were connected with Guide Dogs Cymru. (Image: Guide Dogs Cymru)“I remember feeling completely consumed by worry for his future, and a huge sense of guilt,” she said. “It was like I was failing him, in that I’d somehow given my baby a difficult life before he’d even got started.”
In the months that followed, Chloe spent hours researching the condition, trying to understand how best to support her son. But attending baby groups left her feeling isolated.
“Seeing younger babies engaging more, looking around and reacting to things was incredibly hard. I’d often drive home in tears.”
Louie was later diagnosed with nystagmus, a condition that causes involuntary eye movements. Chloe said she struggled to access support until she finally reached an Eye Care Liaison Officer — and within 24 hours, Guide Dogs Cymru stepped in.
‘An absolute lifeline’
Guide Dogs arranged a home visit, linked the family with a Qualified Teacher of the Visually Impaired, and offered counselling support.
“They were an absolute lifeline to our family,” Chloe said. “It was a huge relief to finally have the right support reaching out to us.”
Louie now attends fortnightly My Time To Play sessions in Gowerton, where children under four with visual impairments develop key skills through sensory play. The sessions also give parents a chance to connect with others facing similar challenges.
Louie taking part in a My Time To Play session in Gowerton, where children with visual impairments build confidence through sensory play.Louie at home in Neath Port Talbot. His family say he is thriving thanks to early support from Guide Dogs Cymru.“The sessions have been more rewarding than I could ever have imagined,” Chloe said. “They’ve opened up an entire community I didn’t even know existed.”
A milestone moment at the wedding
Chloe married her partner Andrew on 31 January at Pencoed House Estate, with Louie by her side as their “unofficial best man”.
“It will be a very special moment to have Louie with us at our wedding,” she said. “After everything we’ve been through together, it only feels right that he’s up there with us.”
Chloe with her son Louie on her wedding day, where he proudly took on the role of their “unofficial best man”.
(Image: Guide Dogs Cymru)She added that Louie is thriving: standing confidently, exploring the house, and “always with the biggest grin”.
“Louie is happy, curious and thriving, and so am I. That’s something I never thought I’d be able to say during those early months.”
Guide Dogs Cymru is encouraging families of visually impaired children to get in touch to access support through its Children and Young Person services.
More information is available at: guidedogs.org.uk/getting-support
#Albinism #Carmarthenshire #Gowerton #GuideDogsCymru #NeathPortTalbot #nystagmus #visuallyImpared -
A while ago I made a simple web app to make long strings (like IBAN codes, or Italian fiscal codes, but also phone numbers) more readable and accessible for people with low vision / visual impairment.
e.g. cases when people still need to fill in these codes/numners in (paper) forms, or copy them from one device to another ecc.
I made a much uglier version for myself and then this prompted by discussions with people in the Italian #nystagmus association 🙂
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International Albinism Awareness Day.
#albinism #albinismisbeautiful #albino #albinismawareness #albinomodel #albinogirl #love #albinisminafrica #internationalalbinismawarenessday #albinismlivesmatter #albinismbeautiful #albinomodels #blindness #albinismrules #albinogirls #albinotwins #albinotwinsisters #pretty #disabilitiesawareness #albinogirlsrock #childrenwithalbinism #raredisease #lowvision #loveislove #bhfyp #albinismo #visualimpairment #disability #nystagmus…
https://itsmostamazingindia.wordpress.com/2025/06/13/international-albinism-awareness-day/
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I used to float, now I just fall down
I used to know but I'm not sure now
Isn’t that the truth. Completely lost without you.
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#NedBlock - What's the #Meaning of #Consciousness?
https://www.youtube.com/watch?v=1ITC7U_Mt8Y
#PhilosophyOfMind #Mind #PhilosophyOfConsciousness #PhilosophyOfSciene #Science #Neuroscience #GlobalWorkspaceTheory #Percept #Percepts #Reasoning #Language #Cognition #Neurons #Nystagmus #CloserToTruth #RobertKuhn
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(YouTube) Blind user tries Apple Vision Pro - A game changer? https://www.youtube.com/watch?v=KbS7IiLEqM0 Blind and low vision users (also with #nystagmus) can switch from eye tracking to head tracking; #blind #a11y #accessibility
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I have managed to get up this morning. I’m still feeling tired though. Anyone else with nystagmus have their eyes wobble even more when they’re poorly?
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For the past two days, my peripheral vestibular dysfunction, for whatever reason, has exacerbated exponentially.
I am so sick of being trapped in this broken body. I am weary of the constant pain. Of knowing there is no relief to be found.
Even trying to rest in bed is impossible. My body feels like it is completely out of control.
#disabled #InvisibleDisability #Vertigo #Nausea #Nystagmus #Confusion #InnerEarParalysis #ChronicPain #MVA
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A very fascinating thing happened to me today. I got a #migraine. I rarely get them, so I did what I recommend to my patients: look for triggers. The only thing out of the ordinary was that I went to the playground with my 5yo and played on the spinning seat.
I gave myself 100% physiologic #nystagmus--and hours later got a migraine.
#neurology #neurotology #vertigo #vestibular #VestibularMigraine #MedMastodon
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I’m trying to look for a new magnifier as the one I have is not strong enough.
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One area I enjoy spending my time is writing to raise awareness about disability.
Here is a blog I wrote about Nystagmus. It is an eye condition I have.
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A great #PhD opportunity working on #Nystagmus #zebrafish model at Mervyn Thomas lab
https://twitter.com/MervynTh0mas/status/1604728573335592960?t=po5aVfi2_cpto8wU99vbig&s=09