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Working on a very meaningful blog post at the moment. Today almost felt like a huge, joke? But I think that certain experiences happen for a reason so with that, I will take it as further knowledge. Getting things done this weekend before work next week ⭐️ I can do this, just need the help of a little iced coffee hope everyone has a great weekend ❤️
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PD- Alyssa sitting outside working on her laptop wearing an olive green tank and her sunnies ☀️
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#blogger #lowvision #lifegoals #stayingmotivated #alyssairene #lifestyleblogger #summersending #blindgirl #stargardtsdisease #youtubers #happyfridayeveryone #blogpost
Болезнь Штаргардта - наследственная форма макулярной дегенерации, вызывающая прогрессирующее снижение зрения обоих глаз, как правило, до точки официальной слепоты. Основной симптом - снижение МКОЗ до 0.4-0.1. Классификация:
STGD1: самая распространённая, рецессивная форма, вызванная мутациями в гене ABCA4 или CNGB3;
STGD3: редкая доминантная форма, мутация гена ELOVL4;
STGD4: мутация гена PROM1.
Генетический дефект проявляется в визуальном цикле фототрансдуции. Дефект АТФ-связывающего кассетного транспортёра приводит к накоплению токсичного метаболита ЛИПОФУСЦИНА в пигментном эпителии сетчатки.
Наиболее действенным и перспективным лечением на данный момент, является лечение стволовыми клетками.
Исследования продолжаются...
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Stargardt's disease is a hereditary form of macular degeneration, causing a progressive decrease in the vision of both eyes, usually from the point of official blindness. The main symptom is the decrease BCVA was increased up to 0.4-0.1. Classification:
STGD1: the most common, recessive form caused by mutations in the gene ABCA4 CNGB3 or;
STGD3: a rare dominant form, a mutation in the gene ELOVL4;
STGD4: mutation of the gene PROM1.
The genetic defect manifests itself in the visual cycle of phototransduction. The defect of ATP-binding cassette conveyor leads to the accumulation of toxic metabolite LIPOFUSCIN in the pigment epithelium of the retina.
The most effective and promising treatment at the moment is stem cell therapy.
Research continues... #докторроманенко #ophthalmologist #офтальмолог #микрохирургияглаза #ophthalmology #офтальмология #mắt #болезньштаргардта #stargardtsdisease #генетика #генетическиезаболевания #обучениеврачей #maculardegeneration
There was a lot of pressure on today, as my 1500m performance would decide my eligibility for possible selection for the Wolrd Para Championships in Doha this November. Its been such a long hard process with all the paperwork and classifications etc. just to get to this point. So when I woke up this morning to gale force winds and torrential rain I was less than optimistic, especially as I was missing the final Northern League for Sutton to do this race (We won the match and league and are getting promoted well done team ). Add to the bad weather that I woke up feeling sick and spent most of the day lying curled up on the couch. However despite all of that when race time came I was feeling ready to go, and was focused on my goal of running a PB or close to it and ensuring I secured my official 6th place World Ranking in the T13 Classification over 1500m. 3 3/4 laps later I’d done it and only half of a second off my PB in some brutal conditions.♀️ @made_to_run #madetorun #madetorunsthelens #1500m #bmcrace #lovetrack #paraathlete #paraathletics #visuallyimpaired #visualimpairment #stargardts #stargardtsdisease #stargardtsfighter #stargardtsawareness #stargardtsdiseaseawareness #britishmilersclub #sthelenssutton #sthelenssuttonac #worldparas #britishparas #thisgirlcan #runfast #eligible #selection #englandathletics #strava #stravarun #teamgb #track #trackrunner #nikevaporflynextpercent
This man is 72 years old today. My dad. My amazing steadfast dad. At no point in my life do I remember him asking for anything for himself. With a debilitating eye disease that took the ability to drive away from him when I was 4, he continued to work hard. He never complained. Ever. He just kept going. He showed me early on that blaming someone or something else for not becoming who you’re supposed to be is futile. He also taught me how to change the oil in my car, fish and how to hang a picture properly (though I never do that...too impatient).
Happy birthday daddy. I love you. ❤️
This is my symbol cane. I use it in crowded places, especially if I am travelling alone. A symbol cane is a shorter white stick which does not stretch down to the floor and does not have a ball on the end. It is not to guide me in any way, but is, as the names suggests, a symbol to others that I am visually impaired.
When travelling alone in Central London I find it invaluable: people give me time and patience. I can walk right up close to a sign to look at it without getting tutted at, I can take my time getting on escalators, and I can ask TfL staff members or members of the public for the destination of the train without having to explain why I need to ask.
I had the symbol cane in my bag for a good couple of years before I used it, but now if I am in a crowded place where I might feel vulnerable, it helps me to feel confident and equipped, and enables strangers to be kind and supportive.
#SymbolCane #VisuallyImpaired #Stargardts #Disabled #accessibility #StargardtsDisease #MacularDystrophy #MacularDegeneration #SightLoss #PartiallySighted #London #travel #CentralLondon #Underground #TfL #LondonGirl #Friday #Tube #LDN #Cane picture description - Looking down at Alice’s symbol cane, a short white cane, as well as the end of Alice’s shiny black shoes, with the background of the floor of a tube platform. There is tactile paving as well as a white line and a yellow line to show where the platform ends.
⭐️HAPPY FRIDAY⭐️ All smiles for the weekend! Editing Sunday’s video and enjoying this nice day! I hope everyone has a great weekend ❤️
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PD- selfie of Alyssa smiling wearing a fitted white racer back tank with a silver necklace and her hair curled
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#bloggerstyle #blogger #tgif #happyfridayeveryone #itstheweekend #whitetanktop #targetstyle #brunette #beachywaveshair #editingvideo #youtuber #vlogger #beauty #stargardtsdisease #blindfire #lowvision #alyssairene #ltkunder30
When you have a visual impairment or other disability, it is key to have people around you who understand your condition, how it affects you and what adaptations will help you from day to day.
I often think that my husband must be the closest one to understanding how I see. He is constantly describing things to me, reading menus to me and is in such a habit of reading out subtitles on the telly that he recently read them out to his Dad automatically by mistake!
Last year my husband and I took part in a survey with the University of Copenhagen for couples living with sensory loss and the results suggested that “those who can recognize that their partner is very accepting and supportive may feel less insecure and be better able to maintain a harmonious relationship.” It is good to talk and to describe what you see and what you need to make life more accessible with your disability or sensory loss.
#Stargardts #SensoryLoss #Deaf #Blind #StargardtsDisease #VisionLoss #SightLoss #PartiallySighted #VisuallyImpaired #Psychology #Copenhagen #MacularDegeneration #Accessibility #Disability #Musician #Marriage #Husband #Singer #SingerLife #Subtitles #DiscoverUnder1k #Valuable #London #LondonLife #LowVision #Weekend #Sunglasses #Sunnies #Summer #HusbandAndWife
Picture description for #accessibility - Alice and her husband stand in front of a tree on a terrace with tiled terracotta flooring. Alice has a pink and blonde bob and is wearing a bright red vest top and a black and white striped skirt. Her husband is tall with dark hair, wearing a white striped shirt and beige shorts. He is wearing trainers and she is wearing grey heels.
⁉️ How would you diagnose this? ⁉️ Comment below
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Stargardt's disease.
Stargardt disease is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina.
Decreased central vision is a hallmark of Stargardt disease. Side vision is usually preserved. Stargardt disease typically develops during childhood and adolescence.
The symptom that brings most people to an eye doctor is a change in central vision. A doctor looking at the retina of a person with Stargardt disease will see characteristic yellowish flecks in and under the macula. The flecks might extend outward in a ring-like fashion.
The flecks are deposits of lipofuscin, a fatty byproduct of normal cell activity. In Stargardt disease, lipofuscin accumulates abnormally.
A decrease in color perception also occurs in Stargardt disease.
This is me looking right ‘at you’. I’m pointing my eyes towards the person or camera. Whatever I look right at is completely missing. From about 1 metre away means the person has no face: no eyes, no mouth, no nose, no colour. In its place is a grey and black smudged area with flashing lights over the top.
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The second picture is me moving my eyes to use my peripheral as best as possible. I do this constantly to get as many visual signals as possible.
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Peripheral vision isn’t good for acuity and detail though and so if you’re using your peripheral in place of central vision, the thing or person you are looking at needs to be very close to help.
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Over the years I have trained myself to look directly ‘at’ people, because I have found it is better for communicating, especially in my work as a singer and music teacher, and I also find it is easier on my eyes than constantly holding them away, which I have to do for so much of my time (reading, typing etc).
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#stargardts #StargardtsDisease #MacularDegeneration #MacularDystrophy #VisionLoss #VisuallyImpaired #SightLoss #Disabled #disability #accessibility #london #chiswick #blonde #pink #BlueEyes #DiscoverUnder10k #valuable #photography #Eyes #DisabilityBlogger
Picture description - in both pictures, Alice is standing to the side and you can see her head and shoulders. She is wearing a bright pink dress and a circular pendant necklace, which is lilac. Alice has blonde hair and blue eyes. Alice is standing on a path in a park which is lined by green trees. In the first picture, Alice’s eyes are looking directly at the camera, but in the second, her eyes are directed upwards above the camera.