August 1, 2024 • 12 mins
Retinitis Pigmentosa: What causes it? Do we have a cure or treatment for it? What are the symptoms of it? In this episode, we will explore the causes, symptoms, and delve into the history of the condition. We will also discuss how it is diagnosed and take a brief look into blindness.
Check out our website: https://anatomyofillness.com/
Molly Burke (Instagram): https://www.instagram.com/mollyburkeofficial?igsh=MTB5cWQybzdleHR5Ng==
Molly Burke (YouTube): https://youtube.com/@mollyburkeofficial?si=C6m4GPQ64-lq8Q6x
Fighting Blindness Foundation (US): https://www.fightingblindness.org/
Retina UK: https://retinauk.org.uk/
Macular Disease Foundation Australia:https://www.mdfoundation.com.au/about-macular-disease/other-macular-conditions/retinitis-pigmentosa/
References:
https://link.springer.com/protocol/10.1007/978-1-0716-2651-1_1
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinitis-pigmentosa
https://www.healthdirect.gov.au/retinitis-pigmentosa
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3131731/
https://discoveryeye.org/famous-people-with-vision-loss-part-i/
https://www.aao.org/eye-health/news/celebrities-chronic-eye-diseases
https://discoveryeye.org/famous-people-with-vision-loss-part-ii/
https://www.1800contacts.com/eyesociety/blindness-is-a-spectrum
https://www.imdb.com/title/tt3630652/
https://www.ami.ca/new-films-starring-characters-disabilities
https://www.goodreads.com/book/show/20482713-what-milo-saw
https://www.alibris.com/search/books/subject/Retinitis-pigmentosa
https://my.clevelandclinic.org/health/diseases/17429-retinitis-pigmentosa
https://eyewiki.aao.org/Voretigene_neparvovec-rzyl_(Luxturna%E2%84%A2)
https://www.afb.org/aw/16/2/15488
https://www.theguardian.com/lifeandstyle/2019/jul/12/be-my-eyes-app-blind-people-helpers
https://www.visionaustralia.org/news/top-10-assistive-tech-for-patients
https://guidedogs.com.au/vision-services/dog-services/guide-dog-mobility/
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
You've noticed that you are struggling to see at night, often being completely unable
(00:03):
to see.
This has caused you to trip over several times, which your parents have blamed on being clumsy.
As time goes by, you find yourself bumping into door frames and struggling to see things
that are on your sides.
You decide it's time to tell your mother about this issue.
She takes you to the optometrist for a checkup.
(00:30):
Hello and welcome to Anatomy of Illness.
Today's episode is about Retinitis Pigmentosa.
Before we get into the condition, we are going to start with the history.
So why do we know Retinitis Pigmentosa exists?
Throughout the episode, I may refer to it as RP.
We begin around 1500 BC with the Ancient Egyptians.
This is when night blindness was first described.
This was in the Ebers Papyrus which is dated back to 1520 BC.
(00:53):
Night blindness is one of the main symptoms of Retinitis Pigmentosa.
In the papyrus, those suffering from night blindness were recommended to use ox liver
as a way to treat this.
Patients were often instructed to apply roasted ox liver to the eye or eat raw ox liver.
This cause of night blindness may have been caused by a vitamin A deficiency.
They were as high in vitamin A which is why it would have been recommended.
However, back then they didn't know what vitamin A was.
(01:14):
Now we move to Hippocrates in 460 to 379 BC.
He would instruct his patients suffering from night blindness or as he would call it, Nyctalopia,
to eat ox or calf liver.
He used the word Nyctalopia in his sixth book of Hippocrates.
This book is titled Epidemics.
It is debated as to whether he meant this as a way to describe just night blindness
or also including day blindness in the meaning.
(01:36):
As physicians after Hippocrates would use the word to describe those who could not see
during the night and also those who could not see during the daytime.
Dioscorides from the first century AD would instruct his patients to grill goat liver,
eat the liver and apply the juices of it to their eyes.
Galen in the second century AD wrote, "The word describes two kinds of diseases, the
disease where we do not see at night and the one where we do not see during the day."
(01:58):
Galen would give similar instructions to Dioscorides but also instructed those afflicted by night
blindness to expose their eyes to the steam produced by the cooking liver.
In the fourth century AD, Orobacus wrote, "They call Nyctalope someone who sees well
during the day but when the sunset sees worse and during the night see nothing."
In the fifth century, Palladius reported something similar after studying the works of Hippocrates
(02:19):
stating that they "see during the day but do not see at night."
Now in the sixth century, Aetius Amenadienus wrote in his medical books, "They call Nyctalopia
when someone sees well during the day, worse at sunset and when the night falls can see
nothing."
Before the invention of the ophthalmoscope, doctors could only study eye pathology after
death, which for the most part was not useful for the patient suffering from these conditions.
(02:39):
The first description of the pigmented retina was by Bernhard von Langenbeck in 1836.
He called the condition "Melanosis retinae".
Two years later in 1838, the first coloured illustration of a pigmented retina was created
by Friedrich August von Amon.
However these observations were limited as they were not able to associate the retinal
pigmentation with the symptoms of night blindness that retinitis pigmentosa presents with.
(03:01):
In 1851, the ophthalmoscope was invented.
This is the handheld tool that a doctor will use to look into your eye, or the tool that
you rest your head in and look into when you visit the optometrist.
In 1853, Dutch ophthalmologist A.C. van Trigt published his dissertation in Latin titled
"De speculo oculi".
In this he described a 42-year-old man who had been suffering from night blindness and
(03:22):
a reduction in his visual field for the past 20 years.
In this he also drew the fundus of the eye of the patient, the fundus being the inside
back part of the eye.
He noted that the patient could only read with the use of a strong light and facial
field restriction.
At around the same time, Albrecht von Graefe mentioned pigmented deposits in the eye may
be the remains of punctiform hemorrhages.
These are tiny bleeds that are in small blood vessels.
(03:44):
He did not really recognise this as a disease until he observed it in the Spanish Marquis
Ariani, naming the condition Morbus arianus, so "disease of Ariani".
In 1857, Dr Franciscus Cornelius Donders, the teacher of van Trigt, first described “Pigmentbildung
in der Netzhaut”, meaning "pigmented retina", as a peculiar eye disease that
was characterised by black marks on the retina.
(04:05):
During the 19th century, it was difficult to tell the degree of visual field defects
in retinitis pigmentosa, as this could depend on the setting of the testing with light being
an important factor.
Graefe introduced perimetry and visual field testing to ophthalmology.
This was an advancement that allowed him to realise that there was a contracted visual
field in RP.
He published this in his paper "Exceptional behaviour of the visual field in pigment degeneration
(04:26):
of the retina".
In 1901, Gonin published a paper in French titled "Ring scotoma in pigmentary degeneration
of the retina".
In this, he described the progression of the contracted visual field in RP patients.
He stated that the visual field loss began in a partial or complete scotoma, and as the
disease progressed, the visual field defect increased in size.
In more advanced stages, only a small central visual field remained.
(04:48):
In 1945, an electroretinogram was used by Karpe to test photoreceptor function, finding
that the response was abnormal or unrecordable in some.
Karpe stated that these findings could be observed before the appearance of clinical symptoms
or ophthalmoscopic changes in many patients with retinitis pigmentosa.
So before night blindness appeared or you could see dark marks in the back of the eye.
Later, Gouras and Carr discovered that in dominant gene RP, rod damage occurred more
(05:11):
than cone damage.
Rods are the photoreceptor cells that work in low light.
Cones are the photoreceptor cells that work in high light, these are the cells that can
detect colours.
In most cases of retinitis pigmentosa, rod damage occurs first and cone damage occurs
later in the condition.
This is why it is sometimes called rod-cone dystrophy.
What actually is retinitis pigmentosa?
Retinitis pigmentosa is a group of rare eye diseases.
(05:32):
These conditions cause the cells in the retina to break down, this causes vision loss.
These are genetic conditions so only people with a gene mutation for this will get it.
There are several genes that can cause a condition and multiple inheritance patterns that can
occur with the condition.
It can be inherited in either an autosomal dominant, autosomal recessive or an X-linked
pattern.
Normally only one of these will occur in a family.
It can also be a simplex case, so only one person in the family will have the condition
(05:54):
making it hard to determine how it was inherited or whether it is a new mutation within the
person.
This occurs in about 10-40% of cases.
It can also occur as part of another condition, such as Usher syndrome or Bardet-Biedl syndrome.
It is estimated that between 1 in 3,000 to 1 in 4,000 people worldwide will have retinitis
pigmentosa.
How do we test for retinitis pigmentosa?
Initially, an optometrist or ophthalmologist will do an examination.
(06:18):
This will include asking you to read letters off a chart, this may be the Snellen chart
where the top line has one letter and each line has an increasing number of letters,
or it can be the LogMAR chart where all lines have 5 letters.
Testing the pressure in your eyes is another thing they will do.
They will also check your peripheral vision, so what you see on the sides, and check how
your pupil reacts to light.
They may also dilate the pupil to look inside of the eye.
(06:38):
This is done with eye drops.
And they also may take images of the retina with a specialized device.
If they are concerned, then you will be referred for an electroretinography test.
This test is used to measure the retina's response to light.
This checks how the eye cells functions.
There is also the optical coherence tomography scan.
This measures the thickness of the retina.
We'll get right into symptoms and presentation right after this little break.
(07:10):
What symptoms could you expect to see if you had retinitis pigmentosa?
Initially you may have issues with night vision, and also difficulty seeing in dim light.
So this is around dawn or dusk.
You may also have some blind spots in your peripheral vision, so the vision at the sides.
Later on you may have symptoms of having a sensation of flashing or twinkling light,
having only tunnel vision, so what is directly in front of you is what you can see.
You no longer see the sides of your vision.
(07:32):
Being sensitive to bright lights.
This is photophobia.
What should doctors be aware of if their patient has retinitis pigmentosa?
Retinitis pigmentosa is a progressive condition.
This means they are not born blind, but they will lose vision over time.
Most people with retinitis pigmentosa will also not go completely blind.
They will have some form of vision left.
Vision and blindness isn't just a "yes you can see everything" or "no you are completely
(07:54):
blind, the world is pure darkness".
It comes in a spectrum.
Some people who are blind can perceive light and shadows.
There are different types of blindness.
So complete blindness is an inability to see light at all.
This is very rare.
There is also legal blindness.
This is where a person who is visually impaired has 20/200 vision or worse.
20/200 vision is where a person will see at 20 feet away from them what someone would normally
(08:14):
see at 200 feet away.
The best way I can explain this is that you could most likely see a person's face at 20
feet away, which is 6 meters.
But at 200 feet, which is 60 meters, you would have some issues with clearly seeing their
face.
You would not be able to distinguish specific features like freckles or say if a person
had a pimple on their nose.
Most of the detail is gone.
That is what some people with legal blindness experience.
They will have issues with seeing less evident and smaller details before a person with 20/20
(08:39):
vision would.
There is also low vision or partial blindness.
This is where a person may have only central vision or peripheral vision.
A person may be hazy or blurred.
They may also have night blindness or an inability to see in low light conditions.
In retinitis pigmentosa, a doctor should also be aware of
Cystoid macular oedema.
In this, there is an excess collection of fluid in the eyes.
Oedema meaning excess fluid.
(08:59):
And cataracts.
Cataracts can occur with this condition.
This is when the lens of the eye becomes cloudy.
These can be surgically replaced.
How do we treat retinitis pigmentosa?
Currently, for most types of retinitis pigmentosa, it is supportive care and management.
However, for those with two copies of the RPE65 gene, there is a medication called voretigene
Neparvovec-ryzl.
This specific mutation affects between 1000 to 2000 people in the US.
(09:20):
This medication is a type of gene therapy that is injected into the eye to add a functional
version of the gene to the DNA of the eye cells.
There is also for some cases, there can be an artificial retina implanted.
This is called a retina prosthesis.
Apart from this, it is predominantly supportive care, like assistive devices.
These are used to magnify or identify depending on the technology.
There are also apps like Be My Eyes.
(09:41):
This app allows blind and low vision users to call for help from volunteers to provide
visual assistance.
There are also tools like canes that allow people to detect objects or potential hazards
as they are walking.
These come in many different shapes and sizes.
For some, there is also the option to have an assistance dog or a guide dog.
These are specially trained dogs with commands to help visually impaired people navigate
the world safely.
They are not a regular household pet.
(10:02):
Who are some famous people that have retinitis pigmentosa?
There is Isaac Lidsky.
He was a child actor on Saved by the Bell, new class.
He played the character known as Weasel.
Lidsky was diagnosed with the condition when he was 13, becoming completely blind by the
age of 25.
After his acting career, he went into law.
There is also John Wellner.
He is the actor best known for his reoccurring role on CSI Crime Scene Investigation as a
(10:23):
toxicologist.
If you would like to check out a YouTube channel, there is Molly Burke.
She is a Canadian YouTuber that has retinitis pigmentosa.
She was diagnosed at 4 years of age, losing most of her vision at age 14.
She currently does have light and shadow perception.
She is also a public speaker.
Her channel follows her life as a blind woman and attempts to dispel some of the myths and
misconceptions about blindness.
She has also published an audiobook.
(10:43):
It is also called “It's Not What It Looks Like”, in which she shares her experiences
as a blind woman.
If you would like to check out another book, there is “What Milo Saw”.
This book follows 9 year old Milo who was diagnosed with retinitis pigmentosa and what
he perceives that others do not.
He works to expose issues in his grandmother's nursing home, even though most adults have
ignored his observations.
There is also “All the Light We Cannot See”.
(11:04):
Although the main character in this does not have retinitis pigmentosa per se, she does
have another form of blindness called congenital cataracts.
It is based in World War II and follows a blind French teenager as she goes through
with the war.
It is also a Netflix miniseries.
This miniseries accurately depicts blindness and has blind actresses playing the main character.
If you want to check out a film featuring retinitis pigmentosa, there is Borealis.
(11:24):
This movie features a man and his daughter trying to see the Northern Lights before she
goes blind.
It has themes of comedy and crime, so if you are into that, check it out.
If you would like to check out a foundation, for those in the US, there is the Fighting
Blindness Foundation.
This foundation aims to find preventions, treatments and cures for those facing blindness
causing diseases.
For those in the UK, there is Retina UK.
This charity works to support those with inherited forms of vision loss and are investing in
(11:46):
medical research to help with treatments and cures.
For those in Australia, there is the Macular Disease Foundation Australia.
This foundation is a patient-centred organisation working to reduce the impact and incidence
of macular-based diseases.
The macula is the part of the retina responsible for vision.
If you would like to check these foundations out, you can head to the links in our episode
description.
If you want to check out the sources, social media links or any other links, you can head
(12:07):
to anatomyofillness.com.
If you enjoyed this episode and would like to hear more, subscribe to be notified about
our latest episodes.
If you would like to join our community, you can join us on Discord or Instagram.
The links to these can be found on our website.
Otherwise, stick around for the next episode.
Did you know the eye contains around 107 million light-sensitive cells?
(12:38):
This is broken down into 7 million Cone cells allowing you to detect colour and 100 million
Rod cells that allow you to see in the dark.
You've noticed that you are struggling to see at night, often being completely unable
(00:03):
to see.
This has caused you to trip over several times, which your parents have blamed on being clumsy.
As time goes by, you find yourself bumping into door frames and struggling to see things
that are on your sides.
You decide it's time to tell your mother about this issue.
She takes you to the optometrist for a checkup.
(00:30):
Hello and welcome to Anatomy of Illness.
Today's episode is about Retinitis Pigmentosa.
Before we get into the condition, we are going to start with the history.
So why do we know Retinitis Pigmentosa exists?
Throughout the episode, I may refer to it as RP.
We begin around 1500 BC with the Ancient Egyptians.
This is when night blindness was first described.
This was in the Ebers Papyrus which is dated back to 1520 BC.
(00:53):
Night blindness is one of the main symptoms of Retinitis Pigmentosa.
In the papyrus, those suffering from night blindness were recommended to use ox liver
as a way to treat this.
Patients were often instructed to apply roasted ox liver to the eye or eat raw ox liver.
This cause of night blindness may have been caused by a vitamin A deficiency.
They were as high in vitamin A which is why it would have been recommended.
However, back then they didn't know what vitamin A was.
(01:14):
Now we move to Hippocrates in 460 to 379 BC.
He would instruct his patients suffering from night blindness or as he would call it, Nyctalopia,
to eat ox or calf liver.
He used the word Nyctalopia in his sixth book of Hippocrates.
This book is titled Epidemics.
It is debated as to whether he meant this as a way to describe just night blindness
or also including day blindness in the meaning.
(01:36):
As physicians after Hippocrates would use the word to describe those who could not see
during the night and also those who could not see during the daytime.
Dioscorides from the first century AD would instruct his patients to grill goat liver,
eat the liver and apply the juices of it to their eyes.
Galen in the second century AD wrote, "The word describes two kinds of diseases, the
disease where we do not see at night and the one where we do not see during the day."
(01:58):
Galen would give similar instructions to Dioscorides but also instructed those afflicted by night
blindness to expose their eyes to the steam produced by the cooking liver.
In the fourth century AD, Orobacus wrote, "They call Nyctalope someone who sees well
during the day but when the sunset sees worse and during the night see nothing."
In the fifth century, Palladius reported something similar after studying the works of Hippocrates
(02:19):
stating that they "see during the day but do not see at night."
Now in the sixth century, Aetius Amenadienus wrote in his medical books, "They call Nyctalopia
when someone sees well during the day, worse at sunset and when the night falls can see
nothing."
Before the invention of the ophthalmoscope, doctors could only study eye pathology after
death, which for the most part was not useful for the patient suffering from these conditions.
(02:39):
The first description of the pigmented retina was by Bernhard von Langenbeck in 1836.
He called the condition "Melanosis retinae".
Two years later in 1838, the first coloured illustration of a pigmented retina was created
by Friedrich August von Amon.
However these observations were limited as they were not able to associate the retinal
pigmentation with the symptoms of night blindness that retinitis pigmentosa presents with.
(03:01):
In 1851, the ophthalmoscope was invented.
This is the handheld tool that a doctor will use to look into your eye, or the tool that
you rest your head in and look into when you visit the optometrist.
In 1853, Dutch ophthalmologist A.C. van Trigt published his dissertation in Latin titled
"De speculo oculi".
In this he described a 42-year-old man who had been suffering from night blindness and
(03:22):
a reduction in his visual field for the past 20 years.
In this he also drew the fundus of the eye of the patient, the fundus being the inside
back part of the eye.
He noted that the patient could only read with the use of a strong light and facial
field restriction.
At around the same time, Albrecht von Graefe mentioned pigmented deposits in the eye may
be the remains of punctiform hemorrhages.
These are tiny bleeds that are in small blood vessels.
(03:44):
He did not really recognise this as a disease until he observed it in the Spanish Marquis
Ariani, naming the condition Morbus arianus, so "disease of Ariani".
In 1857, Dr Franciscus Cornelius Donders, the teacher of van Trigt, first described “Pigmentbildung
in der Netzhaut”, meaning "pigmented retina", as a peculiar eye disease that
was characterised by black marks on the retina.
(04:05):
During the 19th century, it was difficult to tell the degree of visual field defects
in retinitis pigmentosa, as this could depend on the setting of the testing with light being
an important factor.
Graefe introduced perimetry and visual field testing to ophthalmology.
This was an advancement that allowed him to realise that there was a contracted visual
field in RP.
He published this in his paper "Exceptional behaviour of the visual field in pigment degeneration
(04:26):
of the retina".
In 1901, Gonin published a paper in French titled "Ring scotoma in pigmentary degeneration
of the retina".
In this, he described the progression of the contracted visual field in RP patients.
He stated that the visual field loss began in a partial or complete scotoma, and as the
disease progressed, the visual field defect increased in size.
In more advanced stages, only a small central visual field remained.
(04:48):
In 1945, an electroretinogram was used by Karpe to test photoreceptor function, finding
that the response was abnormal or unrecordable in some.
Karpe stated that these findings could be observed before the appearance of clinical symptoms
or ophthalmoscopic changes in many patients with retinitis pigmentosa.
So before night blindness appeared or you could see dark marks in the back of the eye.
Later, Gouras and Carr discovered that in dominant gene RP, rod damage occurred more
(05:11):
than cone damage.
Rods are the photoreceptor cells that work in low light.
Cones are the photoreceptor cells that work in high light, these are the cells that can
detect colours.
In most cases of retinitis pigmentosa, rod damage occurs first and cone damage occurs
later in the condition.
This is why it is sometimes called rod-cone dystrophy.
What actually is retinitis pigmentosa?
Retinitis pigmentosa is a group of rare eye diseases.
(05:32):
These conditions cause the cells in the retina to break down, this causes vision loss.
These are genetic conditions so only people with a gene mutation for this will get it.
There are several genes that can cause a condition and multiple inheritance patterns that can
occur with the condition.
It can be inherited in either an autosomal dominant, autosomal recessive or an X-linked
pattern.
Normally only one of these will occur in a family.
It can also be a simplex case, so only one person in the family will have the condition
(05:54):
making it hard to determine how it was inherited or whether it is a new mutation within the
person.
This occurs in about 10-40% of cases.
It can also occur as part of another condition, such as Usher syndrome or Bardet-Biedl syndrome.
It is estimated that between 1 in 3,000 to 1 in 4,000 people worldwide will have retinitis
pigmentosa.
How do we test for retinitis pigmentosa?
Initially, an optometrist or ophthalmologist will do an examination.
(06:18):
This will include asking you to read letters off a chart, this may be the Snellen chart
where the top line has one letter and each line has an increasing number of letters,
or it can be the LogMAR chart where all lines have 5 letters.
Testing the pressure in your eyes is another thing they will do.
They will also check your peripheral vision, so what you see on the sides, and check how
your pupil reacts to light.
They may also dilate the pupil to look inside of the eye.
(06:38):
This is done with eye drops.
And they also may take images of the retina with a specialized device.
If they are concerned, then you will be referred for an electroretinography test.
This test is used to measure the retina's response to light.
This checks how the eye cells functions.
There is also the optical coherence tomography scan.
This measures the thickness of the retina.
We'll get right into symptoms and presentation right after this little break.
(07:10):
What symptoms could you expect to see if you had retinitis pigmentosa?
Initially you may have issues with night vision, and also difficulty seeing in dim light.
So this is around dawn or dusk.
You may also have some blind spots in your peripheral vision, so the vision at the sides.
Later on you may have symptoms of having a sensation of flashing or twinkling light,
having only tunnel vision, so what is directly in front of you is what you can see.
You no longer see the sides of your vision.
(07:32):
Being sensitive to bright lights.
This is photophobia.
What should doctors be aware of if their patient has retinitis pigmentosa?
Retinitis pigmentosa is a progressive condition.
This means they are not born blind, but they will lose vision over time.
Most people with retinitis pigmentosa will also not go completely blind.
They will have some form of vision left.
Vision and blindness isn't just a "yes you can see everything" or "no you are completely
(07:54):
blind, the world is pure darkness".
It comes in a spectrum.
Some people who are blind can perceive light and shadows.
There are different types of blindness.
So complete blindness is an inability to see light at all.
This is very rare.
There is also legal blindness.
This is where a person who is visually impaired has 20/200 vision or worse.
20/200 vision is where a person will see at 20 feet away from them what someone would normally
(08:14):
see at 200 feet away.
The best way I can explain this is that you could most likely see a person's face at 20
feet away, which is 6 meters.
But at 200 feet, which is 60 meters, you would have some issues with clearly seeing their
face.
You would not be able to distinguish specific features like freckles or say if a person
had a pimple on their nose.
Most of the detail is gone.
That is what some people with legal blindness experience.
They will have issues with seeing less evident and smaller details before a person with 20/20
(08:39):
vision would.
There is also low vision or partial blindness.
This is where a person may have only central vision or peripheral vision.
A person may be hazy or blurred.
They may also have night blindness or an inability to see in low light conditions.
In retinitis pigmentosa, a doctor should also be aware of
Cystoid macular oedema.
In this, there is an excess collection of fluid in the eyes.
Oedema meaning excess fluid.
(08:59):
And cataracts.
Cataracts can occur with this condition.
This is when the lens of the eye becomes cloudy.
These can be surgically replaced.
How do we treat retinitis pigmentosa?
Currently, for most types of retinitis pigmentosa, it is supportive care and management.
However, for those with two copies of the RPE65 gene, there is a medication called voretigene
Neparvovec-ryzl.
This specific mutation affects between 1000 to 2000 people in the US.
(09:20):
This medication is a type of gene therapy that is injected into the eye to add a functional
version of the gene to the DNA of the eye cells.
There is also for some cases, there can be an artificial retina implanted.
This is called a retina prosthesis.
Apart from this, it is predominantly supportive care, like assistive devices.
These are used to magnify or identify depending on the technology.
There are also apps like Be My Eyes.
(09:41):
This app allows blind and low vision users to call for help from volunteers to provide
visual assistance.
There are also tools like canes that allow people to detect objects or potential hazards
as they are walking.
These come in many different shapes and sizes.
For some, there is also the option to have an assistance dog or a guide dog.
These are specially trained dogs with commands to help visually impaired people navigate
the world safely.
They are not a regular household pet.
(10:02):
Who are some famous people that have retinitis pigmentosa?
There is Isaac Lidsky.
He was a child actor on Saved by the Bell, new class.
He played the character known as Weasel.
Lidsky was diagnosed with the condition when he was 13, becoming completely blind by the
age of 25.
After his acting career, he went into law.
There is also John Wellner.
He is the actor best known for his reoccurring role on CSI Crime Scene Investigation as a
(10:23):
toxicologist.
If you would like to check out a YouTube channel, there is Molly Burke.
She is a Canadian YouTuber that has retinitis pigmentosa.
She was diagnosed at 4 years of age, losing most of her vision at age 14.
She currently does have light and shadow perception.
She is also a public speaker.
Her channel follows her life as a blind woman and attempts to dispel some of the myths and
misconceptions about blindness.
She has also published an audiobook.
(10:43):
It is also called “It's Not What It Looks Like”, in which she shares her experiences
as a blind woman.
If you would like to check out another book, there is “What Milo Saw”.
This book follows 9 year old Milo who was diagnosed with retinitis pigmentosa and what
he perceives that others do not.
He works to expose issues in his grandmother's nursing home, even though most adults have
ignored his observations.
There is also “All the Light We Cannot See”.
(11:04):
Although the main character in this does not have retinitis pigmentosa per se, she does
have another form of blindness called congenital cataracts.
It is based in World War II and follows a blind French teenager as she goes through
with the war.
It is also a Netflix miniseries.
This miniseries accurately depicts blindness and has blind actresses playing the main character.
If you want to check out a film featuring retinitis pigmentosa, there is Borealis.
(11:24):
This movie features a man and his daughter trying to see the Northern Lights before she
goes blind.
It has themes of comedy and crime, so if you are into that, check it out.
If you would like to check out a foundation, for those in the US, there is the Fighting
Blindness Foundation.
This foundation aims to find preventions, treatments and cures for those facing blindness
causing diseases.
For those in the UK, there is Retina UK.
This charity works to support those with inherited forms of vision loss and are investing in
(11:46):
medical research to help with treatments and cures.
For those in Australia, there is the Macular Disease Foundation Australia.
This foundation is a patient-centred organisation working to reduce the impact and incidence
of macular-based diseases.
The macula is the part of the retina responsible for vision.
If you would like to check these foundations out, you can head to the links in our episode
description.
If you want to check out the sources, social media links or any other links, you can head
(12:07):
to anatomyofillness.com.
If you enjoyed this episode and would like to hear more, subscribe to be notified about
our latest episodes.
If you would like to join our community, you can join us on Discord or Instagram.
The links to these can be found on our website.
Otherwise, stick around for the next episode.
Did you know the eye contains around 107 million light-sensitive cells?
(12:38):
This is broken down into 7 million Cone cells allowing you to detect colour and 100 million
Rod cells that allow you to see in the dark.
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