#stargardt disease

[marcusnilo]

Star o quê? Stargardt.

Uma doença que afeta os olhos,

que vai retirando pouco a pouco

a visão de uma pessoa,

fazendo dela mais um ser especial

entre nós.

Ao contrário da maioria dos cegos,

não chega a alterar a cor da íris, não chega a "apagar" o mundo, mas o deixa bem borrado, por sinal.

Não vê detalhes. Mistura as cores.

Só vê de muito perto,

com uma mancha atrapalhando

na visão central.

Não é nem normal nem deficiente

visual total, é simplesmente subnormal.

Não parece, mas às vezes é pior do que se fosse cego.

Todos pensam que é brincadeira... que você está fingindo que não vê. O cego, você dá a mão, ajuda...

Já o subnormal, quando pede ajuda,

você acha que há segundas intenções em jogo.

As pessoas não entendem.

"Olhos tão bonitos e não enxerga direito. Coloca uns óculos e está tudo bem!" Não adianta explicar.

O mundo não está preparado para entender

o que não consegue ver.

Estar bem é uma questão de espírito.

Ainda não há cura, mas há uma luz no fim do túnel.

Tudo bem que "quem tem Stargardt nem consegue ver o túnel,

quanto mais a luz no fim dele!",

como ouvi outro dia mesmo de uma portadora. Ter a doença pode ser ruim, (e geralmente é),

mas não deve ser motivo para se enterrar em vida.

Acredito na cura amanhã ou depois de amanhã, mas enquanto não vem, vamos levando,

vamos estudando com a ajuda de outros olhos

eletrônicos ou emprestados de um ente querido próximo

que acredita que, apesar dos pesares,

vamos vivendo... vamos amando... vamos que vamos.

#stargardt #visão #olhos #deficiência #retina #subnormal #mácula #deficiency #visually impaired #stargardt disease

[sanjeevannetralaya]

Stargardt Disease Symptoms Type Causes & Treatment

Stargardt disease, also referred to as Stargardt macular dystrophy or juvenile macular degeneration, is an inherited disorder affecting the macula - the small central area at the back of each eye that provides sharp, detailed vision in straight lines.

Disease typically begins during childhood or adolescence and progresses over time to cause progressive vision loss, including central vision loss, difficulty reading, difficulties recognising faces and loss of color vision.

Stargardt disease is caused by mutations to the ABCA4 gene, which provides instructions for producing an ATP-binding cassette transporter A4 protein that transports lipofuscin away from retinal cells - in those suffering from Stargardt disease, lipofuscin accumulates and eventually kills macula cells, leading to vision loss over time.

Current treatments of Stargardt disease do not offer a permanent solution, but treatments may help manage symptoms and slow progression such as tinted glasses, vitamin supplements, or low-vision rehabilitation.

Stargardt disease is an inherited disorder caused by mutations to genes passed down from parent to child. More specifically, Stargardt disease stems from mutations to ABCA4 gene which provides instructions for making an ATP-binding cassette transporter A4 protein involved with transporting lipofuscin out of retina cells.

What are the causes of Stargardt Disease?

Stargardt disease is caused by mutations to the ABCA4 gene that lead to an accumulation of lipofuscin in cells of the macula, ultimately leading to their death and gradual vision loss. Stargardt is passed down autosomally recessively; meaning a person must inherit two copies from each parent in order to develop symptoms; those inheriting only one mutated copy from either parent are known as carriers who do not usually show signs or symptoms but can pass the gene onto future generations.

Stargardt disease can be caused by mutations to the ABCA4 gene, with severity and progression depending on which mutation has taken place.

What are the symptoms of Stargardt Disease?

Stargardt disease affects central vision, or your ability to see fine details and objects directly in front of you. Symptoms may differ depending on the person suffering, but may include:

· Blurry or distorted vision when looking directly at objects.

· Difficulties reading text that appears smudged, distorted, or blurry.

· Loss of color vision where colors appear washed-out or faded-out. And difficulty recognising faces or familiar objects as soon as they enter your field of vision.

· Sensitivity to bright light or difficulty adapting to changes in lighting.

· Visual hallucinations or illusions such as seeing patterns or shapes that do not actually exist. Progressive vision loss over time that could eventually lead to legal blindness.

Stargardt disease typically impacts both eyes equally, with symptoms often starting in childhood or adolescence; however, they can sometimes appear later in life. Not everyone experiencing Stargardt experiences all of its symptoms, as its severity and progression varies considerably among individuals.

Sanjeevan Netralaya has a customised treatment plan for each patient and treats Stargardt Disease effectively. There is no discomfort, pain or side effect from the treatments. You should have your eyes checked regularly, so make an appointment today!

#health & fitness #eye health #sanjeevan netralaya #india #eye care #eyesight #ayurveda #Stargardt Disease #retina centers #retina #eyes #ayurvedic eye care

[majimassqueaktoy]

Just thinking. Trying to maybe write later...

#Okay so in a decent amount of fic the writers make it that Makoto can read braille #and at the end of the day its a completely understandable little detail #but it always makes me 🤔 #because being blind doesn't mean you'd automatically learn to read braille... #my aunty has this thing called stargardts disease which is genetic and she was diagnosed over 20 years agao #and has been legally blind for god probably 18 years #and she's still never learnt to read braille #she got taught to walk with a cane bc australia does have p good healthcare for the visually impaired #she even did a touch typing course back before she got put on the disability pension and was still working #i think they might have even given her a book of braille bc i vaguely remember touching it #but she never learnt #so im just not really sure makoto wpuld have learnt to sufficiently read in braille in the short period she had #theres no reason for Lee to know how to read it either so I imagine in 1988 it would be difficult #i mean Lee could have known someone who came and taught her a bit but idk #i think logically she probably just couldnt read in braille #had the tojo clan not upended her life with Lee and depending if she regained vision anytime soon #she might have learned but i think a lot of people who had vision and then lost it as an adult dontnecessarily #act the same as someone who was born with it or lost it very very young #case in point: my aunty #so yeah one of those things thats genuinely not really an issue #im just a mental case that THINKS and reads into things #and goes Hmm 🤔 #lmao #apparently she says she reads in braille in the game which i dont remember but ? #tbh that just reads as the writers not actually properly thinking about how short a time she would have had to learn it tbh #like she might have been learning bit by bit but i highly doubt she was fluid with it #idk these games are bad with disability lmao #Aoki is a prime example just bc he got a lung transplant doesnt mean he would suddenly be fuckin able bodied like ????

[eyestemcells]

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#stem cell therapy for optic nerve atrophy in india #stem cell therapy for retinitis pigmentosa in india #stem cell therapy for diabetic retinopathy in india #stem cell therapy for rod and cone dystrophy in india #stem cell therapy for stargardt’s or macular dystrophy disease in india

[garagegalaxy]

y’know what? fuck it.

here’s to people who are visually impaired, no matter the cause.

people with cone-rod dystrophy, with retinal detachment, with sudden vision loss, with visual impairment caused by disease or stroke or tumors or head injuries.

people with macular holes/edema/pucker/telangiectasia, with coloboma, with stargardt disease, whatever it may be.

you are Absolutely Fucking Valid. don’t let anyone tell you otherwise or i will gnaw on their bones.

:3

#visually impaired #low vision #blind #blindness #positivity #positive affirmations

[skullkandiii]

My Janitor/Roger headcanon

my overall theory with little nightmares, is that the Signal Tower warped everyone in SOME way, and before then, people/things were normal

i can't decide whether he'd have an office job, or work as a janitor at Pale City Elementary (name i came up with for the school)

growing up, Roger loved to whittle. whether it be tools or figures, he enjoyed crafting under the tree near the Signal Tower that was being built. his house was one of the last few in the city that wasn't torn down due to more expansion of the city. eventually that changed, and his childhood home was sold and taken down. the passion that had fueled his creativity with whittling had faded into a mere memory. The Signal Tower, where he had spent countless hours near honing his craft, now stood tall and proud, a symbol of change

with age, Roger's eyesight began to deteriorate rapidly. Stargardt disease, a condition affecting the retina, cast a shadow over his world, blurring the once vibrant colors and shapes he had grown accustomed to seeing. simple tasks became increasingly challenging, and the frustration and helplessness he experienced only deepened his self-loathing

days turned into weeks, and weeks into months, as Roger isolated himself from the outside world, outside of going to work. his once-beloved whittling tools lay abandoned, collecting dust in a forgotten corner of his small apartment. the sound of laughter and children playing outside his window felt like a cruel reminder of the life he had lost

one day, as he and other folks dragged themselves to work, the light of Signal Tower began to burn a bright red. not the normal kind of light it gave off, no, this was different. people could hear it, the loud, blinding light gave off a long drawn humming sound. the deep sound drove people mad as the light grew brighter. and brighter. and brighter.

and that's all I got for this short theory/headcanon!! pleeaassee let me know if you'd like to hear more!

i have developing ideas for the other monsters of the Maw! and I'd love to share more if anyone is interested!

#theory #headcanon #little nightmares #little nightmares 2 #pale city #the janitor little nightmares #art #doodles #little nightmares roger

[dear-indies]

Disabled actors with ungiffed roles (of course any roles are welcomed) for disability pride month:

Michael J. Fox (1961) - has Parkinson's Disease - Designated Survivor (2018), See You Yesterday (2019).

Mat Fraser (1962) - has thalidomide-induced phocomelia - Loudermilk (2017-2020).

Daryl Mitchell (1965) African-American - is paraplegic - Fear the Walking Dead (2018-2023).

Warwick Davis (1970) - has spondyloepiphyseal dysplasia congenita - Willow (2022-2023).

Selene Luna (1971) Mexican - has dwarfism - Mayans M.C (2022-2023).

Cherylee Houston (1974) - has Hypermobility Ehlers-Danlos syndrome - Coronation Street (2010-2023).

Callan Mulvey (1975) ¼ Maori, ¾ Scottish - is blind in one eye - has been in a lot of things including Last King of the Cross (2023), Firebite (2021-2022), Till Death (2021), and Mystery Road (2020).

Shannon Murray (1976) - is paraplegic - Viewpoint (2021), Get Even (2020).

Kurt Yaeger (1977) - is a leg amputee - Another Life (2021).

Katy Sullivan (1979) - is a double leg amputee - Dexter: New Blood (2021-2022).

Jamie-Lynn Sigler (1981) Cuban / Ashkenazi Jewish, Romaniote Jewish, Sephardi - has multiple sclerosis - Big Sky (2021-2023).

Prince Amponsah (1985 or 1986) Ghanaian - is a double arm amputee, with his right arm amputated above the elbow and his left arm amputated below the elbow - Avacado Toast the series (2022) and Station Eleven (2021-2022).

Rana Daggubati (1984) Telugu Indian - is blind in one eye - Rana Naidu (2023).

Rick Glassman (1984) Jewish / Italian - is autistic - As We See It (2022), Not Dead Yet (2023).

Ali Stroker (1987) - is paraplegic and bisexual - Echos (2022), Only Murders in the Building (2021-2022), Ozark (2022).

Josh Thomas (1987) - is autistic, has ADHD, and is gay - Everything’s Gonna Be Okay (2020-2021).

Jillian Mercado (1987) Domincian - has spastic muscular dystrophy - The L Word: Generation Q. (2019-2023).

Ruth Madeley (1987) - has spina bifida - The Almond and the Seahorse (2022).

Tim Renkow (1989) Mexican Jewish - has cerebral palsy - Jerk (2019-2021).

Melissa Johns (1990) - is an arm amputee - Grantchester (2021-2022).

Steve Way (1990) - has muscular dystrophy - Ramy (2019-2022).

James Moore (1992) - has cerebral palsy - Emmerdale (2018-2023).

Arthur Hughes (1992) - has an upper limb indifference - The Innocents (2018).

Madison Ferris (1992) - has muscular dystrophy - Panic (2021).

RJ Mitte (1992) - has cerebral palsy - The Unseen (2023).

Mei Kayama (1994) Japanese - has cerebral palsy - 37 Seconds (2019).

Ryan J. Haddad (1995) Lebanese - has cerebral palsy - The Politian (2019-2020).

Lauren Spencer / Sitting Pretty Lolo (1996) African-American - has Lou-Gehrig’s disease - The Sex Lives of College Girls (Season 2).

Annabelle Davis (1997) - has dwarfism - Hollyoaks (2023).

Kayla Cromer (1998) - is autistic - Everything’s Gonna Be Okay (2020-2021).

Micah Fowler (1998) - has cerebral palsy - Speechless (the latter seasons!)

Daniel Monks (?) - is quadriplegic - Sissy (2022).

Matthew Jeffers (?) - has dwarfism - New Amsterdam (2018-2023).

Ben Mehl (?) - has macular degeneration called Stargardt's disease, which causes one to lose central vision- You (2021).

Gloria May Eshkibok (?) Mohawk, Ottawa, Irish, French - is Two-Spirit (she/her) and has one eye - OChiSkwaCho (2018).

Zack Weinstein (?) - is quadriplegic - Sing It! (2016).

Angel Giuffria (?) - is a congenital arm amputee - To the Dust (2022), Good Trouble (2022), Impulse (2019).

Joci Scott (?) - is paraplegic - Smash or Pass (2023).

Jacob Mundell (?) - congenital hand amputee - The Expanse (2021-2022).

+ HERE'S MY DISABLED FC MASTERLIST FOR MORE!

+ let me know if you have suggestions!

+ let me know if anybody wants suggestions with youtube content!

#fc help #rph #rpc

[batrogers]

Of my Cryptid boys: Bellum found out that possessing Link is an automatic failstate. He lost all control, both of himself and his new host save what little he can scrounge up...

(Unfortunately for him this young man has a strange advantage in telling when Bellum has taken control of an eye: if he can see, it's not his anymore.)

IIII

Character design based off That Broken Promise Wind Waker Link, Outset, who has congenital blindness (references are mostly Stargardt's disease.)

Yes he is randomly walking on water. Why? Because it looked cool.

#my art #Wind Waker #Phantom Hourglass #Bellum #Wind Waker Link #LOZ: WW #LOZ: PH #Possession #possessed Link #Bellum!Link #cw tentacles #eyes #tw tentacles #too many eyes #blind character #disability headcanons #disabled Link

[coochiequeens]

Another example for SheWon

ByAnna Slatz

July 13, 2023

A 49-year-old trans-identified male seized the bronze medal in the women’s 400m T12 running competition at the 2023 World Para Athletics Championships in Paris. Valentina Petrillo holds several women’s titles and had broken multiple women’s running records, but won his first women’s world championship medal at Chartley Stadium today.

Petrillo, born Fabrizio, was racing against Omara Durand of Cuba, Alejandra Perez Lopez of Venezuela, and Fatima Ezzahra El Idrissi of Morocco. Due to their visual disability, Durand and Lopez competed with guides, who were wearing bright yellow vests and assisted the women to ensure they stayed on the course of the track.

In the final result for the 400m race in the T12 visual impairments category, Petrillo took the bronze, displacing El Idrissi.

According to the World Para Athletics Championships guidance on participation, “an athlete shall be eligible to compete in women’s competition if she is recognized as female by law.” But their policy book goes on to note that it will “deal with any cases involving transgender athletes in accordance with the [International Olympic Committee’s] transgender guidelines.”

Peter Eriksson, the record-making former head coach for the Canadian Olympic and Paralympic program, spoke to Reduxx on Petrillo’s bronze placement.

“It’s shocking to see that women’s opportunities to a medal were taken by a cheating 49-year-old male,” Eriksson said. “The International Paralympic Committee is diminishing the rights of fairness in women’s sport by allowing transgender athletes at their events.”

Eriksson calls the World Para Athletics guidelines a “cop-out,” noting that every sporting authority has the ability to create their own rules. He also says that World Para Athletics policy was adapted from that of World Athletics, which recently ruled that trans-identified males who underwent a male puberty were no longer eligible to participate in women’s championship competitions.

“It’s a cop-out not to make a stance in support of women in sport. It feels kind of like they are trying to push the blame onto the IOC,” Eriksson says. “They adapted World Athletics rules and should also adopt the World Athletics regulation on transgender and DSD participation.”

As previously reported by Reduxx, Petrillo currently holds 8 women’s running championship titles, but failed to earn even one while competing as a male. Petrillo first changed his name to Valentina and began taking estrogen in 2019. The following year, he began competing against female athletes and has since broken multiple Italian women’s running records.

Petrillo has been diagnosed with Stargardt disease, a disorder of the eye that causes retinal degeneration over time. Due to this visual impairment, he has been permitted to compete in both matches designated for women with disabilities, as well as those which are not.

In September 2020, Petrillo raced in the women’s 100-, 200- and 400-meter competitions at the Italian Paralympic Athletics Championships in Jesolo, despite not having undergone “gender affirming” surgery.

At the time, Petrillo hadn’t even updated his identification documents, which still listed his sex as male, though this did not prevent him from being entered into the match. He won first place in all three races and therefore qualified to represent Italy at the Tokyo Olympic Games. But after a last-minute intervention by the Italian government, Petrillo was barred from competing against women with disabilities at the Paralympics in 2021.

At the Master’s Athletics Championships in Arezzo in October 2020, Petrillo outpaced both Cristina Sanulli and Denise Neumann, both of whom had previously won world and European Masters titles and have been regarded as the best in their events. Sanulli and Neumann would later sign a petition calling for men to be barred from women’s sport.

In March of this year, Petrillo competed in and took the win at the 200m race for women aged 50 to 54 at the Italian Indoor Masters Championship in Ancona.

Leading up to the race, a women’s rights advocacy group called RadFem Italia contacted government officials to ensure that Petrillo would not be granted access to the women’s locker rooms. In response, Petrillo was provided with a designated changing room specifically for him at the race grounds.

Petrillo soon after lashed out in a Facebook post wherein he equated criticism of his presence in women’s sports to Nazism, telling detractors they were “on the same level as Hitler” and comparing sex-based sports categories to a 1936 ban on Jewish athletes.

Upset at being denied the use of the women’s locker room, Petrillo wrote, “In Ancona, you made me have a terrible time, it is not fair… you’ve relegated me to a ‘dedicated’ locker room,” a situation which he claimed was similar to the segregation of those called appestati, or sufferers of a plague.

Reduxx also previously revealed that Petrillo admitted that he used to “try on his mother’s clothes” when he was younger, a behavior that was considered a symptom of a sexual disorder known as transvestic fetishism until recently.

He has also said that prior to declaring a transgender identity he would steal his wife’s clothing. While describing a memory of “touching” his mother’s skirt for the first time, Petrillo said, “It was an incredible emotion. It was like touching heaven with your finger tip.”

#SheWon #2023 World Para Athletics Championships #Paris #Women’s sports is not a retirement plan for old men #Peter Eriksson is speaking the truth #International Paralympic Committee #Men comparing not being allowed jnto the women’s locker rooms to segregation #Another TIM who stole clothing from the women in his life #Transvestic fetishism

[marjaystuff]

Interview with Tarrie Marie

Blaque Pearle

Creed Family Book 1

Tarris Marie

Black Odyssey Media

Sept 26th, 2023

Blaque Pearle by Tarris Marie intertwines crime, romance, and the ‘90s era. Much like her characters, the author also took a powerful journey, having to overcome Stargardt Disease, a genetic condition that caused her legal blindness and cost her a corporate job. 

The plot has deeply flawed but relatable characters who risk everything for love and family.  The main female lead, Pearle Brown was an aspiring actress that got caught up in her brother’s scheme.  She decides to use her beauty and acting skills to swindle money and expensive jewels from unsuspecting people. When she and her brother are hired to steal a priceless Basquiat from the debonair kingpin and art collector, Blaque, her talents might not be enough to keep her from falling into a trap she never saw coming, falling in love with him. Although he is from two powerful crime families he also falls in love with Pearle and will do anything to keep her safe.  Together they use their skills to battle their enemies and help those in need.

The book has vivid descriptions, captivating characters, and a complex storyline. It is not only riveting but informative as well.

Elise Cooper: Why become a writer?

Tarris Marie: I decided to write after I lost my central vision.  I had come from the corporate world and after losing some of my vision I became depressed and was on a downward spiral. When I was on the floor, I heard a voice telling me to get up.  I asked God what to do and heard, write a book. This was in 2020 when I decided to write a series, a total of four novels.

EC:  Do you want to talk about your disease?

TM:  Stargardt Disease is a hereditary disease of the retina, affecting the central sight.  It is a juvenile form of Macular Degeneration. For me, I got it my late thirties.  Now I am legally blind.  It does not affect my peripheral vision, but I could not see anything I directly look at. My support system is my husband, children, family, friends, and the best doctors. I use technology to help me become independent. 

EC:  Is the story related to your life?

TM:  I wrote about the decade in which I grew up. I was trying to find myself, so I went back in time. This book is the first book to come out, taking place in the 1990s.  I grew up in an urban environment in Gary Indiana, America’s murder capitol.  I grew up in a loving home.  I lived the 1990s culture, the hip-hop music, and the hairstyles. I met a lot of people, learned a lot, and grew a lot. 

EC:  Why did you make your hero and heroine “bad guys?”

TM:  They start off as “bad.”  But there was redemption, and the characters were relatable considering the decisions made was to survive. I was also able to relate to these characters because I do know what it feels like to be in a place where you must do what is necessary to survive. 

EC:  Why not end the story with Part I?

TM:  Part I was more about the drug aspect, while Part II concentrated on human trafficking. In the late 1990s it used the Internet, a lot of traps for young girls.  

EC:  How would you describe Pearle?

TM:  Low-key, greedy, quiet, protective, and loyal. I named her Pearle, symbolic because it has a lot of layers.  Like the gemstone, the character has a hard exterior, but has layers. 

EC: How would you describe Blaque?

TM:  Gentle but could be rough and powerful.  A listener, honest, funny, open-minded, adventurous, mysterious, and serious. I named him Blaque to represent the black male that I knew. He loved the women in his life and respected them. The color black is mysterious and sexy. Putting his name along with Pearle, the gemstone Black Pearl is unique, created in a different type of oyster. It represents healing of broken hearts. Like me, I needed to heal because I was broken. I hope to take any reader on that journey as well.

EC: Next book?

TM:  The title is Empress Creed, out in February 2024.  It is a prequel with a hindsight into the family. It takes place in the 1930s in the Midwest and shows how the crime family got started. 

THANK YOU!!

[nexuseyecare]

Inherited retinal diseases (IRD)

Inherited retinal diseases (IRD) are a group of rare genetic conditions that affect the retina, the delicate tissue at the back of the eye responsible for vision. These conditions are typically caused by mutations in specific genes responsible for maintaining the health and function of the retina. IRD can result in varying degrees of visual impairment, and in some cases, lead to blindness. They can be inherited in several ways, such as dominant, recessive and sex-linked. 

The most common types of IRD include Retinitis Pigmentosa (RP), Stargardt disease, Bests Juvenile Dystrophy and others.

Symptoms of IRD

The symptoms of IRD can vary widely, even among individuals with the same condition. According to retina specialists, night blindness, tunnel vision, and difficulty distinguishing colours are common early signs. Vision loss is usually slow-progressing. In later stages, central vision may also be affected, impacting simple daily activities like reading and recognising faces. Living with IRD often requires adapting to a changing visual landscape.

Diagnosis of IRD

Early and accurate diagnosis is pivotal in managing IRD. Electrophysiology testing often helps clarify if IRD is present or not, and genetic testing can help identify specific mutations for an accurate diagnosis and management plan.

Treatment

Regular visits to an ophthalmologist or retinal specialist, to monitor the progression of the disorder, manage symptoms, and provide support are important. Genetic counselling may also be recommended to understand the inheritance pattern and potential implications for children and family members. Additionally, emerging treatments and clinical trials may be discussed with retina specialists as part of ongoing care. 

While there is currently no cure for most IRD, ongoing research holds promise for future treatments. Gene therapy, stem cell therapy and retinal implants are among the innovative approaches being explored to slow or halt the progression of vision loss. Additionally, low vision aids, orientation and mobility training, and adaptive technologies play a crucial role in managing visual challenges and enhancing the quality of life for those affected by IRD.

Support groups and advocacy organizations are valuable resources to connect individuals and families affected by IRD. These communities provide a platform for sharing experiences, accessing resources, and participating in research initiatives that aim to unravel the mysteries of these complex disorders. 

IRDs are challenging and often difficult to predict and manage. As science continues to advance, there is hope for improved diagnostics and ground-breaking treatments. Through increased awareness, support networks, and ongoing research, vision loss due to IRD may one day be preventable or effectively managed. It is important for individuals with IRDs to work closely with their healthcare team and retina specialists to address their specific needs and stay informed about available options.

#retina specialists #retinal disease treatment #retina specialist near me

[dghealth]

Inspiring Stories to mark Disability History Month by Liz Forsyth & Clark Adams

As Co-Chairs of the Disability Network we’ve had a look at some people with disabilities who have inspired generations of people with their incredible achievements and some inspiring local young people: Libby Clegg and Zoe Irving.  We asked Scottish paralympic sprinter and tandem track cyclist Libby Clegg, MBE to contribute to our blog.  Libby has Stargardt’s Macular Dystrophy disease, which has…

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[spacenutspod]

5 min read NASA’s Modern History Makers: Maricela Lizcano Maricela Lizcano poses inside NASA Glenn Research Center’s Aerospace Communications Facility.Credit: NASA/Bridget Caswell >back to gallery Maricela Lizcano never dreamed of working for NASA. In fact, she wasn’t planning on furthering her education until she had a revelation in her late twenties. “I was watching one of those forensic shows, and I loved the way they caught the criminals with science,” said Lizcano, research materials engineer at NASA’s Glenn Research Center in Cleveland. “I wanted to be able to do that. I realized I should be studying science and engineering.” It took Lizcano about ten years to prepare mentally and financially to go back to school, and during that time, she received some startling news. “I found out that I was losing my sight, and it was very scary,” Lizcano said. “I think that was one of the things that tossed me off the rails. I had so many questions: ‘What am I going to do? How am I going to work or go to school? How quickly am I losing my vision?’ There were no answers.” Lizcano was diagnosed with Stargardt disease, a rare genetic eye disease that occurs when fatty material builds up on the macula — the small part of the retina needed for sharp, central vision. “My Stargardt disease started on the outer edges of my macula, and over time, it grew to the center,” Lizcano said. “By the time I was 45 years old, it had pretty much taken all of my central vision, and now I rely on my peripheral vision to see.” Eventually, Lizcano viewed this as another obstacle to hurdle, no different from any others she had experienced in her life. She attended the University of Texas–Pan American, now called the University of Texas Rio Grande Valley. She started during a second summer session, easing her way to full-time attendance while also holding a job. Because of her new disability, she couldn���t see what professors were writing on the board. She taught herself to listen intently to the topics being discussed in the lecture, then after class, she read the textbook and rewrote the lecture notes using special magnification tools. “It took that much longer, but you learn to adapt,” Lizcano said. “There are certain skills you develop because of the changes you have to make when you have a disability. I learned that I really have to listen.” After five years, Lizcano completed her mechanical engineering degree. She didn’t get a job right away after graduation, so she continued her education and earned master’s and doctorate degrees. “I can’t just look at my disability as some great thing that I really had to overcome,” Lizcano said. “I think a lot of people overcome many obstacles because we are driven by the desire to achieve things. You don’t see the challenges as challenges, you just see them as something to conquer to get to your goal.” In 2010, former President Barack Obama signed an executive order to increase federal employment of individuals with disabilities. The executive order directed executive departments and agencies to improve their efforts to employ workers with disabilities through increased recruitment, hiring, and retention of these individuals. “Through the Workforce Recruitment Program, I had the opportunity to interview with representatives from federal agencies,” Lizcano said. “I heard nothing for a long time, but then suddenly I got an email from NASA Glenn asking if I’d present my research.” She accepted a job as a research materials engineer and now leads a team working on high-voltage materials for electrified aircraft. She collaborates with various universities to develop composite insulation materials and lightweight conductors. Even now working at NASA, Lizcano faces challenges that she finds ways to overcome. She depends on her fellow colleagues to carpool to work and accessibility tools — like the magnifier app — to use her computer. “Understanding my needs allowed me to get over the fact that I lost my independence,” Lizcano said. “It was a mind shift to be all right with asking for help.” Lizcano’s recommends a science, technology, engineering, and mathematics career to anyone looking for a challenge or excitement. “We’re always solving problems. If you’re one of those people who really wants to make a difference in the world, STEM careers are a good place to start,” Lizcano said. “Any challenge that you may have in result of a disability is no different than the challenge you’re trying to solve, and it will give you the motivation and unique skills you need to be successful.” NASA is in a Golden Era of aeronautics and space exploration. In partnership with commercial and private businesses, NASA is currently making history with significant missions such as Artemis, Quesst, and electrified aviation. The NASA’s Modern History Makers series highlights members of NASA Glenn’s workforce who make these remarkable missions possible. Jacqueline MinerdNASA’s Glenn Research Center Explore More 6 min read Lynn Bassford Prioritizes Learning as a Hubble Mission Manager Lynn Bassford levels decades of experience and a desire for self-growth as she helps lead… Article 7 days ago 1 min read Dr. Guy Bluford Reflects on 40th Anniversary of Historic Shuttle Flight  Article 1 week ago 3 min read Glenn in the Community Article 1 week ago

#space #astronomy #news #science

[vaidyaeyehospital]

What are some unusual or rare eye conditions that most people are not aware of?

There are several unusual and rare eye conditions that many people may not be aware of. These conditions often affect a small percentage of the population and can vary in terms of symptoms and severity. Here are a few uncommon eye conditions:

1. Aniridia: Aniridia is a congenital condition characterized by the absence of the iris (the colored part of the eye). People with aniridia often have sensitivity to light and visual impairments.

2. Achromatopsia: Achromatopsia, also known as "total color blindness," is a rare genetic condition in which individuals cannot perceive any colors and see the world in shades of black, white, and gray. They also often have extreme light sensitivity.

3. Ocular Albinism: Ocular albinism is a genetic condition that affects the pigmentation of the eyes, resulting in reduced visual acuity and nystagmus (involuntary eye movements). People with ocular albinism may have pale blue or gray irises.

4. Stargardt Disease: Stargardt disease is an inherited form of macular degeneration that typically affects children and young adults. It leads to central vision loss and can cause difficulty with reading and recognizing faces.

5. Iris Coloboma: Iris coloboma is a congenital condition in which there is a notch or gap in the iris. This can cause varying degrees of visual impairment and light sensitivity.

6. Keratoconus: Keratoconus is a progressive eye condition in which the cornea (the clear front surface of the eye) thins and bulges into a cone shape. This can result in distorted vision and may require specialized contact lenses or surgery for correction.

7. Retinitis Pigmentosa: Retinitis pigmentosa is a group of inherited disorders that affect the retina, leading to gradual vision loss. Symptoms often include night blindness and tunnel vision.

8. Charles Bonnet Syndrome: This condition occurs in people with significant vision loss, such as those with macular degeneration or glaucoma. They experience vivid and complex visual hallucinations, which can be unsettling.

9. Visual Snow Syndrome: Visual snow is a neurological condition in which individuals perceive constant, static-like visual disturbances, similar to "visual noise." It can be accompanied by other visual symptoms.

10. Birdshot Chorioretinopathy: This is a rare inflammatory eye disease that primarily affects the retina and choroid. It can lead to vision loss, floaters, and difficulty adapting to changes in lighting.

These are just a few examples of rare eye conditions. While these conditions are uncommon, they can have a significant impact on an individual's vision and quality of life. If you or someone you know experiences unusual or concerning eye symptoms,

It's important to consult an eye care professional Dr. Vaidya one of the Best Eye Doctors in Mumbai for a proper diagnosis and management. know more information visit our hospital at Dr. Vaidya Eye Hospital.

#dr. vaidya eye centre #eye specialist in andheri #drvaidyaeyehospital #Eye Doctors in Mumbai #Dr. Vaidya Eye Hospital.

[crow-exist]

So I found out that I have Stargardts Disease. (An eye disease that causes central blindness and vision issues)

My mother is legally blind and has Stargardts, so this isn't new to me by any means at all. She's the type you will see with sunglasses and a cane due to the stage her stargadts is.

Mine is in the very early stages, known as stage one so I just see small blurry or hazy shapes and white speckles or floaties in my central vision. But it was surprising to find out as late as 26 that I have it.

The tiny dots and gold flecks is Stargardts.

#stargardts #disability #disabilitiesawareness

[toughgirlchallenges]

Nicky Button - #BlindGirlWalking - Walking from the Orkney Islands to the Scilly Isles. Solo and unsupported.

Nicky Button was born in Gloucester and grew up in Worcester. Having a very happy childhood.

Nicky was always last to be picked for any teams at school and was the most uncoordinated and non sporty child being told to go and swim after a term of tennis when she still hadn’t hit a ball. Her teens and twenties removed around horses and children , whilst she ran a yard starting and schooling young horses and teaching people to ride alongside being a foster mother. 

In 2000 with an eight year old daughter she moved to Surrey where she spotted a group of people kayaking on a local canal, she went along to the club and heard only two parts of the sentence, Wednesday nights are adults only, whitewater training and we go to the pub afterwards. Six months later she was staring at her first White water river in Wales. Several swims later and at the end of the river she was hooked. 

The kayaking totally changed her life and she soon realised that whilst she certainly wasn’t the most proficient, she had found her tribe. Through the kayaking she was invited to help on set on Midsummer Murders and the rest as they say is history, she retrained learning swift water and rope rescue, working at heights and confined spaces, with fire and setting up stunts and rigging. There then followed some incredible years where she felt that she was being paid to have the best time in life. 

In 2013 after going away skiing she returned and was unable to see her daughter across the room. Four months later she’d had her driving license removed which knocked onto no job and then no home. Her life felt as though it was falling apart. 

She moved to South Devon and stormed along the South West Coast path. A few years on and she was part of walking groups for people with Visual Impairment and encouraging people to get out walking. 

On moving to Worcester in 2021 she met an amazing group of strangers who became friends, a trip up Ben Nevis was followed by entering her first Ultra challenge a 50km over Exmoor. When she completed that she looked for her next challenge. 

During lockdown she’d dreamed she’d walked from Scotland to Devon, she decided to make this a reality and so Nicky’s most marvellous ridiculous adventure was born. Walking from the Orkney Islands to the Scilly Isles. Solo and unsupported.

  New episodes of the Tough Girl Podcast go live every Tuesday at 7am UK time - Subscribe so you don’t miss out. 

You can support the Tough Girl mission to increase the amount of female role models in the media - especially in relation to adventure and physical challenge by signing up as a patron. www.patreon.com/toughgirlpodcast. Thank you. 

  Show Notes

54 year old mum of 1

Walking from the Orkney Islands to the Scilly Isles

Starting the challenge on April 1st (April fools day!)

Not being into team sports and not enjoying the outdoors

Preferring reading about adventure 

Discovering individual sports 

Her passion for horses and riding

Joining The Pony Club 

Training to be a nanny

Running away to work with horses

Teaching riding at Pony Club and Riding for the Disabled 

Bringing up her daughter

Moving to Surrey 

How joining a Canoe Club changed her life

How her views on fear changed 

The link between fear and excitement 

Starting to work in tv production

Making her career change at 38

Over coming the limiting beliefs of other people’s thoughts

Learning how to run and getting fit for search and rescue 

If it’s important to you, you’ll find a way 

How her life changed in 2013

Being diagnosed with a rare genetic eye disease called Stargardts

Now being registered as Severely Visually impaired S.V.I /blind

Losing her driving licence, her job, and her home in the space of 4 months

Dealing with the trauma 

Moving back home to Devon and spending time on the South West Coast Path

Action for Blind People - now connected to RNIB

Joining a local walking group and how that helped process her thoughts and feelings 

Getting to a place of acceptance?

How her life is different now

What she can see through her eyes

Completing her first ultra challenge 50km over Exmoor 

How it changed her self confidence 

Navigation 

The idea for - Nicky’s most marvellous ridiculous adventure

Sharing the adventure and making it a reality 

The route

Talking with people along the way about sight loss

Self funding and working on a tight budget

Hoping that people will come and join her 

Starting in the Orkney Islands

Fears and concerns before the start of the trip

Wanting to prove to herself that she can still do big thing

Having a sense of purpose 

Final words of advice for women

What do you actually want to do?

    Social Media

  Instagram: @blind.girl.walking 

Facebook: Nicky’s most marvellous, ridiculous adventure 

Just Giving: https://www.justgiving.com/page/nicky-button-16797715248 

    Check out this episode!

#podcast #women #sports #health #motivation #challenges #change #adventure #active #wellness #explore #grow #support #encourage #running #swimming #triathlon #exercise #weights