Sight loss and grief - My Blurred World I've been losing my eyesight since I was 3 years old and I've found myself grieving for it at times, here's my personal experience of sight loss and grief

“Part of me quietly hoped for things to stabilise following a dramatic episode of deterioration, ‘This will be the last time’ I thought, but alas, [ #RetinitisPigmentosa ] had other ideas.”: buff.ly/Rd2cbsq

by @myblurredworld.bsky.social
#VisionLoss #disability #blind #ChronicIllness

This account posts in English, Catalan, and Spanish, and this video is in English. #RP #retinitispigmentosa

Looks can be deceiving: a case of Rho-associated retinitis pigmentosa sine pigmento in a 74-year-old man A 74-year-old man with a history of dry eye and elevated intraocular pressures (IOP) presented to neuro-ophthalmology with chronic, progressive bilateral peripheral vision loss. About 1 year prior, he...

Genetic testing can be an invaluable tool for identifying nonclassic presentations of retinitis pigmentosa. This report illustrates a diagnostic path to uncovering a case of Rho-associated retinitis sine pigmento.

bit.ly/cjo_retiniti...

#Ophthalmology #Retina #RetinitisPigmentosa

RP9 revisited; RP9 p.(H137L) remains a likely cause of dominant splicing factor-Retinitis Pigmentosa - European Journal of Human Genetics European Journal of Human Genetics - RP9 revisited; RP9 p.(H137L) remains a likely cause of dominant splicing factor-Retinitis Pigmentosa

📢 RP9 revisited: cleaning up the human genetics literature to improve diagnostic outcomes
#RP9 #RetinitisPigmentosa #Genetics #RareDisease

www.nature.com/articles/s41...

Bayer／BlueRock、iPSC由来細胞治療OpCT-001が網膜色素変性でFDAオーファンドラッグ指定取得 | STELLANEWS.LIFE STELLANEWS.LIFE（ステラニュース・ライフ）は、科学や技術、医薬品分野における最新の研究成果や発見 | STELLANEWS.LIFE（ステラニュース・ライフ）は、科学や技術、医薬品分野における最新の研究成果や発見

FDA grants Orphan Drug Designation to BlueRock Therapeutics’ investigational cell therapy OpCT-001 for the treatment of retinitis pigmentosa

stellanews.life/technology/8...

#RetinitisPigmentosa #iPSC #CellTherapy #Bayer #BlueRock #FDA #OrphanDrug #ClinicalTrials

Liam O'Carroll, sits on a wooden chair during a Q&A panel. He is holding a Sight Loss Council leaflet in one hand and a microphone in the other. He is wearing a white hoodie which has the Sight Loss Councils logo on the front. In the background, tables, chairs and green plants feature.

February is Retinitis Pigmentosa Awareness Month. In this powerful personal essay, Liam O’Carroll reflects on living with RP, exploring vision, identity and creativity - and reminding us that RP is not one story, but many. 👉 https://bit.ly/3Zh6I90

#RPAwarenessMonth #RetinitisPigmentosa

On a table is a sandwich, chips, and a drink. Directly across, you see me in the background looking at her.

RP means my lady sees in a small tunnel. When I want her lunch, I've learned to sit inside of her tunnel of food. #LowVisionAwarenessMonth #retinitisPigmentosa

A quote from a medical researcher: ''I think the biggest challenge is general quality of life - people regard sight and I think rightly so as the most important sense, if you think of how life is without sight how many limitations do people face, that plus despite its widespread presence especially with ageing population, we don’t yet have truly efficient treatments for the most severe for eye pathologies. Professor Paraoan - Manchester Metropolitan University."

Today is the start of Retinitis Pigmentosa Awareness Month! 👁️

If there are aspects of inherited sight loss that you think are important for the wider public to be more aware of, please share them with Retina UK in the comments below! 😊

#RetinitisPigmentosa #RPAwarenessMonth #RetinaUK50

A woman in a mushroom hat sitting on a bench

Hi new book besties! My name is Brittany! A few things about me -
✨I love reading
✨I have a condition called Retinitis Pigmintosa which is causing me to go blind
✨I love food, travel, books, and talking about what it looks like to be blind. Let’s be friends! #books #retinitispigmentosa #booksky

NEWS: Non-coding gene discovered to be a cause of blindness
Dr Mireia Carcolé Estrada writes about this new research that may offer answers to families with unexplained vision loss.
www.progress.org.uk/non-coding-g...
#genomics #genetics #DNA #visionloss #blindness #retinitispigmentosa

#author #firstbook #retinitispigmentosa #blindnessisaspectrum #localbookstore #blind

A new study (article in English) discusses new understanding of the causes for previously unidentified causes of #RetinitisPigmentosa offering hope and potential treatments for many more patients. The study looked at changes during RNA coding #RP

She Refused to Give Up Cooking After Losing Her Vision. Her Guide Dog Became Her Sous Chef (Exclusive) In this exclusive, home cook Anne Hatton Ogden shares how her guide dog and assistive tools help her grocery shop and cook, even while legally blind.

Find us a cuter sous chef - we'll wait. 🦮 👩‍🍳

Anne, who has #VisionLoss due to #RetinitisPigmentosa, counts on #GuideDog Angelo to help her navigate to the ingredients that make her home-cooked dishes delicious. #BlindNewWorld

(Story via EatingWell ⬇️)

Eilen alkoi oikea silmä särkemään pitkästä aikaa.

Unohdin pitää taukoja päivän aikana. Tärkeää muistaa lepuutella silmiä sulkemalla ne ja olla vain.

#RetinitisPigmentosa #blind #sokea #nakovamma

A @dkjei-uhn.bsky.social team is moving us closer to a future where blindness may not be inevitable in #RetinitisPigmentosa (RP). 👁️

In a new study, the team offer a new lab RP model and a first look at the disease’s development.

🔗 Read more: www.uhnresearch.ca/news/retinal...

Stressful Shots! | #CoinFuryTV on #Twitch #StardewValley #BlindGamer #RetinitisPigmentosa

Restoring Joy and Independence Through Vision Support Support Christian author Amy Bovaird as she battles vision loss, or buy her books to help her regain independence and keep writing.

During this season of giving, many of us look for opportunities to directly bless someone we know is deserving — someone who is already working hard to overcome obstacles.

Amy is one of those people. heidigraymcgill.com/2025/12/08/h...

#RetinitisPigmentosa #RP #VisionLoss #Blind #PayitForward

Original post on mementomori.social

Hoksasin nyt et Vivaldin ikkunan alareunassa on tuo Sivun toiminnot nappi ja sieltä saa päälle käänteiset värit-suodattimen.

Nyt voin lukea nettiartikkeleita, joiden sivuston väritys on valkoisella taustalla ja mustalla tekstillä. Käännän värit toisinpäin ja lukeminen helpottuu huomattavasti. 👌 […]

Original post on mementomori.social

Hämmentävää muistella menneitä, kun miettii millainen näkötilanne oli silloin. 🤯

Nuorena pelasin salibandya, koripalloa, kävin myös keilahallissa reeneissä oman pallon kanssa ja oman koiran kanssa agilitykentillä. Siellä juostiin ja lujaa.

Mitään näistä ei pysty nykyään tekemään enää, paitsi […]

Original post on mastodon.africa

If you're a cyclist, you may be interested to know that early bird entries for the Dischem Ride For Sight are now open. The race will take place on 15 February 2026 at the Boksburg City Stadium.

Please consider entering; your entry fee goes directly to Retina SA, to help support their research […]

A cute Jack Russell rests its paw on a laptop keyboard. The on-screen caption reads “Hey you,” and a QR code beside it links to a sign-up form.

Updates that matter - Connecting patients, researchers, and organisations in the Usher community. Sign up today: tinyurl.com/SignUpToUSI

#UsherSyndrome #RareDisease #HearingLoss #RetinitisPigmentosa #BlindnessAwareness #NonProfit #PatientAdvocacy #SpeirGorm #Ireland

Madison Maidenberg of Love Is Blind is living with retinitis pigmentosa. 👁️

Marc Mathias, MD, explains how this inherited eye disease affects night & peripheral vision and why awareness matters.

#RetinitisPigmentosa #EyeHealth #LoveIsBlind #MedSky

Early Onset Cataract, Retinal Detachment Risk Higher With Retinitis Pigmentosa - Ophthalmology Advisor Investigators conducted a large-scale retrospective cohort study of the prevalence and age of onset of retinal detachment and cataracts among patients with retinitis pigmentosa.

#AAO2025: Investigators conducted a large-scale retrospective cohort study of the prevalence and age of onset of #RetinalDetachment and #Cataracts among patients with #RetinitisPigmentosa. Presented at AAO 2025.

Read here: https://bit.ly/4oxMZwo

#Ophthalmology #MedSky #EyeSky

A woman wearing a jumper is covering her eyes with her hands. There is a pair of hands also covering her ears. Caption in image reads, Invisible Disabilities Week.

This week is Invisible Disabilities Week, and we are asking you to share: What invisible challenges do you wish others could understand better? Let us know in the comments below.

#SeeTheInvisible #SeeUSH #UsherSyndrome #HearingLoss #RP #RetinitisPigmentosa #BlindnessAwarenessMonth #SpeirGorm

Original post on mementomori.social

Katsoin keittiössä uunin valoa. Sitä oranssia valoa, joka ilmoittaa onko uuni valmis vai ei.

Testasin vähän näkötilannetta. Katsoin valosta hieman sivummalle vasemmalle muutaman sentin verran. Se valo katosi näkökentästä kokonaan ja se korvaantui valekuvalla, eli valon päälle tuli uunin […]

Photographer Creatively Explores His Deteriorating Vision Through Collaboration Matt Cetta, who was diagnosed with the degenerative eye disease Retinitis Pigmentosa, has transformed his experience of vision loss into art through a new collaboration with fellow photographer Christina DeOrtentiis. Together they explore resilience, blindness, and the evolving meaning of sight through their project, Photogenic Alchemy. [Read More]

Photographer Creatively Explores His Deteriorating Vision Through Collaboration Matt Cetta, who was diagnosed with the degenerative eye disease Retinitis Pigmentosa, has transformed his experience of vision loss into art through a new collaboration with fellow photographer Christina DeOrtentiis. Together they explore resilience, blindness, and the evolving meaning of sight through their project, Photogenic Alchemy. [Read More]

Love Is Blind's Madison on 'high chance' she'll lose eyesight from rare disease: what is retinitis pigmentosa? "There's a good chance that I’m going to go blind"

Are you watching Netflix's #LoveIsBlind? 💕

If so, you may recognize Madison Maidenberg, the season 9 contestant who's opening up about losing her vision to #RetinitisPigmentosa. #BlindNewWorld

(Story via Cosmopolitan ⬇️)

Three young scientists from the IOR Tübingen earned prestigious #RD2025 Travel Awards to present their retinal research in Prague! Congrats 💪
#RetinitisPigmentosa #AMD
@tueneurocampus.bsky.social @unituebingen.bsky.social

👉 www.eye-tuebingen.de?tx_news_pi1%...

Original post on mastodon.africa

Talking on the radio now about someone being able to read and write upside down.

I used to be able to do that. I thought everyone could, but when someone gave me a page to read once and I read it flawlessly upside down, they were gobsmacked.

Since my RP has gotten so bad over the past few […]