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#RetinitisPigmentosa
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Driving With RP Be Like... (2019);
I feel that I've posted this one before. If I did, apologies. Today I was supposed to go to the hospital to check for a possible dental surgery, but I couldn't go because of the headache (still there while typing this). Anyway, I've been told that it was a good thing that I didn't go because there is a great deal of bureaucracy that needs to be done first. Meh.
Anyway, this is a shot that I've taken for RP month (February) of 2019. Initially, I called it a fail. Later on though (months later maybe), I've edited it to what you see now. Fun project!
#RP #RetinitisPigmentosa #comic #comical #funny #humor #humorous #goodmorning
I feel that I've posted this one before. If I did, apologies. Today I was supposed to go to the hospital to check for a possible dental surgery, but I couldn't go because of the headache (still there while typing this). Anyway, I've been told that it was a good thing that I didn't go because there is a great deal of bureaucracy that needs to be done first. Meh.
Anyway, this is a shot that I've taken for RP month (February) of 2019. Initially, I called it a fail. Later on though (months later maybe), I've edited it to what you see now. Fun project!
#RP #RetinitisPigmentosa #comic #comical #funny #humor #humorous #goodmorning
Retina #SouthAfrica is selling raffle tickets, where you can win a trip to #Zanzibar: https://retinasa.org.za/shop/Zanzibar-Raffle-p744675228/?utm_source=MastodonAfrica
Enter at the link above, and help support them in their efforts to find a cure for #RetinitisPigmentosa and other inherited retinal conditions.
(Even if you don't want to enter, consider donating to them anyway)
RetinaSA Online StoreZanzibar Raffle - Shop - Retina South AfricaWIN A LUXURY ZANZIBAR ESCAPE - Valued at R75,000! 🌴 Enter our exclusive raffle for a chance to win 7 nights in paradise at the boutique Michamvi Sunset Bay Resort – tucked away on Zanzibar’s serene southeast coast. 🏖️ This unforgettable getaway includes return economy flights and a full-board stay with breakfast, lunch & dinner daily. Relax on a private white-sand beach, enjoy breathtaking
The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#retinitispigmentosa
#visuallyimpaired
#til
#animals
#prayer
#prayerrequests
#church
#ministry
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The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#retinitispigmentosa
#visuallyimpaired
#til
#animals
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The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#retinitispigmentosa
#visuallyimpaired
#til
#animals
#hope
#encouragement
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The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#til
#animals
#crosswords
#Wordle
#wordle1427
#retinitispigmentosa
#visuallyimpaired
#hope
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The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#til
#animals
#crosswords
#retinitispigmentosa
#visuallyimpaired
#hope
#encouragement
#Wordle
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#til
#animals
#crosswords
#retinitispigmentosa
#visuallyimpaired
#hope
#encouragement
#Wordle
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#southafrica
#british
#crosswords
#til
#animals
#retinitispigmentosa
#visuallyimpaired
#hope
#encouragement
#Wordle
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
South Africans, if you have a Woolworths MySchool/MyVillage/MyPlanet card, please consider nominating Retina South Africa as a beneficiary. They do good work in supporting people with #RetinitisPigmentosa (like me) and other inherited retinal diseases, and they also contribute towards research for treatment and a cure (currently there is none).
Use your app to change beneficiaries, or email your card number to cs@myschool.co.za and ask them to do it. #SouthAfrica #VisuallyImpaired
Jahas. Kaaduin sitten asfalttiin. En nähnyt portaita ja kävelin ns. tyhjään.
Perus usherin arki.
Näkökykyni on muuttunut 15 vuoden aikana ja sen huomaan kyllä itsestäni, kun aloin muistelemaan mitä kirjoja luin silloin fyysisenä kirjana.
Nälkäpeli kirjasarja on yksí tällainen.
Viidennen kirjan luen digitaalisessa muodossa.
Entinen ammattiurheilija Pekka Hyysalo kertoi Iltalehden artikkelissa ettei päässyt haluamaansa ravintolaan sisälle vammansa vuoksi.
Haluan kertoa myös omasta kokemuksestani vastaavanlaisesta tilanteesta.
Oli rento ilta ja olin kuulonäkövammaisten kanssa liikenteessä. Useammalla oli valkoinen keppi käytössä ja osa kommunikoi viittomakielellä. Olimme kiertäneet parissa pubissa ja vielä olisimme käymässä viimeisessä paikassa.
Tällä kertaa porstari oli ottanut juuri minut silmätikukseen, koska liikuin epätasaisesti ja oletti minun olevan umpihumalassa. Minulla oli valkoinen keppi ja opas mukana. Jo pelkästään tämä ei riittänyt kertomaan vaikeudesta liikkua "normaalisti". Automattisesti oletettiin sen liittyvän yksinomaan humalatilaan.
Oli lähellä etten päässyt sisälle, mutta lopulta portsari ymmärsi tilanteen ja päästi sisään.
Vinkkini jokaiselle, joka työskentelee asiakaspalvelutyössä, on tämä 
Kysykää, älkää olettako.
Mind The Brightness, Please. (February: Retinitis Pigmentosa Awareness Month, 2025)
For this Friday, I've decided to post this shot which I've taken last week using UV filter (and using my modified camera for full-spectrum photography). Initially, it was just an experiment really, since I didn't shoot in UV in a long time. UV photography is quite hard, way harder than infrared photography, for technical issues and considerations. For this reason, using high ISO in my case is a must (and hence more grain).
Initially, I've shot this as an experiment. I wanted to apply a technique that "almost" blowout the highlights (working with the histogram delicately here). Then, as I was working on the effect, it occurred to me how much I struggle with brightness in real life.
For people who read about RP, the impression is that patients of RP would need a lot of light; which is true. However, such brightness can be "blinding" in the sense of not being able to adapt and discern details. A real-life example: The kitchen at home is completely white and around the middle there is a support beam, which is also painted white, beside other white things. Roaming the kitchen can be tricky at times (especially when, my eyes show flyers or flashes) and I often need to pause a little to adjust my perspective in this space. It is not uncommon for me to head directly into that beam, because I didn't see the edges clearly.
Patients of RP, generally speaking, retain low-contrast vision and that makes them slow to move around, especially around the stairs where feeling the steps by foot is a must. For this reason, I wear polarizing shades over my glasses to help add contrast; though it doesn't work all the time, but it was/is definitely a must when driving during the day (something I don't do much right now anyway), and also around the house, in the yard specifically.
#RP #RetinitisPigmentosa #UV #ultraviolet #bright #brightness #awareness #February #visuallyimpaired #eyes #goodmorning
For this Friday, I've decided to post this shot which I've taken last week using UV filter (and using my modified camera for full-spectrum photography). Initially, it was just an experiment really, since I didn't shoot in UV in a long time. UV photography is quite hard, way harder than infrared photography, for technical issues and considerations. For this reason, using high ISO in my case is a must (and hence more grain).
Initially, I've shot this as an experiment. I wanted to apply a technique that "almost" blowout the highlights (working with the histogram delicately here). Then, as I was working on the effect, it occurred to me how much I struggle with brightness in real life.
For people who read about RP, the impression is that patients of RP would need a lot of light; which is true. However, such brightness can be "blinding" in the sense of not being able to adapt and discern details. A real-life example: The kitchen at home is completely white and around the middle there is a support beam, which is also painted white, beside other white things. Roaming the kitchen can be tricky at times (especially when, my eyes show flyers or flashes) and I often need to pause a little to adjust my perspective in this space. It is not uncommon for me to head directly into that beam, because I didn't see the edges clearly.
Patients of RP, generally speaking, retain low-contrast vision and that makes them slow to move around, especially around the stairs where feeling the steps by foot is a must. For this reason, I wear polarizing shades over my glasses to help add contrast; though it doesn't work all the time, but it was/is definitely a must when driving during the day (something I don't do much right now anyway), and also around the house, in the yard specifically.
#RP #RetinitisPigmentosa #UV #ultraviolet #bright #brightness #awareness #February #visuallyimpaired #eyes #goodmorning
Chained (RP Awareness Month, 2025)
So, for this Friday, I'm posting something different from my usual "matches". This time I'm posting something that I do every year in February; The Retinitis Pigmentosa Awareness Month.
It took me a while to come up with something and I was thinking about more a "tech-savvy" shot, but then I realized I don't have to do all of that if I can just deliver the idea and some aspect about the struggles that a person with this disease, like me, do face. Hopefully, by next Friday, I'll be posting another one related to this topic.
I will leave defining the disease for those who don't know about it to the internet - look it up. The image here reflects the confinement that such a disease causes, despite that in my case, I'm still better than my other two siblings who are almost completely blind and can't even differentiate colors. I don't use a cane (yet), but it doesn't make any difference when it comes to being imprisoned in one place and fearing to drive anywhere by. Ironically, I was officially diagnosed in 2013, but nevertheless, I was driving before and after that time, and not until I got an official certificate for my condition (to be classified as a person of special needs) in 2021 - only then, driving had been a bit of a hassle; One, because of my surrounding environment and the blame-game if I do so, and two, because of the law, as I might get fined if I got caught driving with me being recorded as someone with an eye condition (and not supposed to drive). All in all, it does feel like being chained to the cane, even if there was no cane, and leaving a lot to be desired for the peace of mind and mental health…
#RP #retinitispigmentosa #retinitis-pigmentosa #awareness #chain #chained #cane #blind #visuallyimpaired #visual #eyes #retina #health #mentalhealth #impression #impressionism #goodmorning
So, for this Friday, I'm posting something different from my usual "matches". This time I'm posting something that I do every year in February; The Retinitis Pigmentosa Awareness Month.
It took me a while to come up with something and I was thinking about more a "tech-savvy" shot, but then I realized I don't have to do all of that if I can just deliver the idea and some aspect about the struggles that a person with this disease, like me, do face. Hopefully, by next Friday, I'll be posting another one related to this topic.
I will leave defining the disease for those who don't know about it to the internet - look it up. The image here reflects the confinement that such a disease causes, despite that in my case, I'm still better than my other two siblings who are almost completely blind and can't even differentiate colors. I don't use a cane (yet), but it doesn't make any difference when it comes to being imprisoned in one place and fearing to drive anywhere by. Ironically, I was officially diagnosed in 2013, but nevertheless, I was driving before and after that time, and not until I got an official certificate for my condition (to be classified as a person of special needs) in 2021 - only then, driving had been a bit of a hassle; One, because of my surrounding environment and the blame-game if I do so, and two, because of the law, as I might get fined if I got caught driving with me being recorded as someone with an eye condition (and not supposed to drive). All in all, it does feel like being chained to the cane, even if there was no cane, and leaving a lot to be desired for the peace of mind and mental health…
#RP #retinitispigmentosa #retinitis-pigmentosa #awareness #chain #chained #cane #blind #visuallyimpaired #visual #eyes #retina #health #mentalhealth #impression #impressionism #goodmorning
I was born with #RetinitisPigmentosa, a debilitating, degenerative condition resulting in my vision slowly dimming, my peripheral vision slowly disappearing, loss of colour vision, and ultimately loss of central vision too. There's no cure, and barring a miracle, it will eventually render me completely blind.
Clearly, that wasn't meant to happen, and I don't believe it was caused by God. I also don't believe God loves me any less because of it, nor do I believe that God would begrudge me taking steps to ease, mitigate, or correct it (if it were possible, which it isn't, being as there's no cure).
Now, if I could be born with RP, then it's entirely reasonable to me to think that someone could be born with the wrong sex organs. It wasn't meant to happen, and it wasn't caused by God. Furthermore, God doesn't love them any less because of it, nor would He begrudge them taking steps to ease, mitigate, or correct the situation.
Sure, it needs a bit more care to diagnose, since I feel like most cis people probably go through phases where they fantasise about being the opposite sex (I know I did, back in Primary School), and sometimes those fantasies can get quite prolonged, and be pretty method. It doesn't necessarily mean they're trans.
But if they *are* #trans, they should be allowed to do something about it.
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@scabpharmacy I have #RetinitisPigmentosa, so this is definitely a cause close to my heart!
In case you didn't know, I have #RetinitisPigmentosa.
Retina SA is negotiating to bring clinical trials to #SouthAfrica. Your support will help to make this a reality. Please click here to find out how you can get involved (there's also a link on the top menu if you'd just like to make a cash donation): https://retinasa.org.za/get-involved/fundraising/?utm_source=MastodonAfrica
Retina South AfricaFudraising | community | volunteers | events | create | vision |Retina South Africa needs help raising funds to restore sight. get involved in one of our signature evets or start your own.
On 30 November, I was diagnosed with retinitis pigmentosa, so I wrote a blog post about living with a genetic eye disease that causes gradual vision loss and currently has no cure.
https://blog.helenchong.omg.lol/en/posts/2024-12-21-living-with-retinitis-pigmentosa/
Galaxy GardenLiving with Retinitis PigmentosaI talk about being visually impaired, particularly with a genetic eye disease that causes gradual vision loss and currently has no cure.