Flamm Is Going Blind! What is Retinitis Pigmentosa? | Eye Doctor Discusses Retinitis Pigmentosa Cure
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- Опубліковано 15 вер 2024
- Flamm is a fellow UA-camr who built a huge audience playing a popular video game, then came out with a video explaining that he is going blind. He explains that he was diagnosed with a condition called retinitis pigmentosa, but what is retinitis pigmentosa? Watch as Dr. D reacts to Flamm's video and further explains what the condition is, if there is a retinitis pigmentosa cure, retinitis pigmentosa treatment and the vision loss that is typically associated with it as the disease progresses. #retinitispigmentosa #visionloss #flamm #vision
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Original video: • I'm Going Blind
Flamm's UA-cam Channel: / @flammyt
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🏡 We are Salisbury Eyecare and Eyewear - a cold start optometry practice and optical shop that is owned and operated by Dr. Melanie Denton Dombrowski in downtown Salisbury, NC. Our office operates out of a darling Victorian home where we provide medical and routine eye care and Dr. Denton specializes in dry eye treatment and management of various ocular diseases. Dr. Denton is a member of the Bausch and Lomb Speakers Bureau, a former member of the Alcon Contact Lens Speakers Bureau, a current Alcon consultant, a member of the Allergan Advisory Board, a member of the Valeant Advisory Board, a TearCare consultant, a Lumenis consultant, and a member of the North Carolina Board of Examiners for the North Carolina Optometric Board. We started this channel to provide patient education and eye-related product reviews, as well as to share our experiences in the office and at community events. None of our videos are directly sponsored. We hope you enjoy our videos! Make sure to leave comments and suggestions about what you’d like to see next!
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inherited retinal disease
Diagnosed with RP..7 years ago.. still going out at night, still attending class reumion.. still teaching kids, cant drive a car but im okay with it.. still travelling and will travel abroad again.. still falling in love.. RP cant stop me..i admit i have a lot of low moments but i know its part of life.. RP is just a disease...i have my God.. who is a healer..
Bien parler 😂😅
Thanks for making this video to help people like me better understand the disease,
This is honestly my biggest fear... My father was the only person in our family to have this ever, now since I'm a male, I am likely diagnosed with Retinitis Pigmentosa. My dream since I was little was to drive fast cars on a race track, and thinking about this disease just makes me feel so bad that I won't be able to do that. I also play hockey, I work so hard every practice, but I still have to face the fact that if I do get diagnosed, even if I'm really good, I won't be able to play competitive.
Is a terrible thing for sure. Sad to have anyone lose sight at that young of an age
I am 40, and have this disease, and we have never known anyone in our family to have it
Aye man, I’m 20 and I have it, we don’t know anyone in my family who has it either
@@domink666 how are you a year later ?
I am the only one too. I am glad no one else suffers but it makes it hard to have no one to talk to about it
@@CrazyCoolArt615 have you experienced vision loss
I have retinitis Pigmentosa, aswell as Stargarts. I’ve never had any previous family members with eye issues, aside from Grandpa with Caderacts. It sucks. A lot. I’m 16, 17 in two months. I’m a gear head, so always working on motors. I can’t get my license, can’t drive legally, can’t see in the dark, but the weird thing is that I can’t see in my peripherals, but in the pitch black night, when I couldn’t see at all, I can now see 60/100 percent. I won’t lie, I’m terrified. I want to try to look at other options, RPE65, Stem Cell treatment, or if possible straight up replacing my eye somehow. From my belief with the retina, you can somehow bypass it by taking it straight from a lens to the brain, but not sure. I won’t lie again, I’ve got no clue what’s next. I’m lost, tired, depressed, and just plain sad. But I’m still trying.
You have Stargardts and Retinitis pigmentosa? I think thats impossible. Have you had both diagnosed?
I am 40 years old and have this disease, I had cataract surgery back in 2017 I believe it was
Oh God...I feel for these people. One of my biggest fears is losing eyesight, my ocular rosacea bothers me enough and makes my eyes hurt and impacts my eyesight, and sometimes I fear things would go downhill so bad and I would start to lose it slowly... But I know I have good days and bad days. I'm a gamer too, I can't imagine how hard it must be for anyone to come to terms with losing such a basic function, it must be so devastating.
man i remember when i first got diagnosed. it was a day ill never forget. its been 7 yrs since i was diagnosed and its getting worse. but i keep moving forward.
My dads got RP but fortunately it slow progression. One eye is bad but the other he can still see (age 53). Its really painful seeing someone you love lose their vision.
Yes 😭
I’ve been suffering from this ever since I was a baby, bad vision, no depth, tunnel vision, night blindness.
It has put my life in such a downward spiral that I became such a reclusive person, I barely go out anymore,
I’m the first one in the family where it actually manifested and because of this I had to let go of most of my future or what I wanted in life. 😞
Don't give up! You can live an active and full life with RP. My great-aunt (born in 1909!) had RP and she worked all over South America as an ambassador. You may have to adjust your goals -- just keep pushing, there are blind individuals in every profession. Take care of yourself.
I have RPNM 66 years old. I can see light and that’s about it. I’m fortunate that I have a great family and friends. I tend to stay positive and keep myself busy. A better part of two studies but neither have worked out. There really is no cure or treatment at this time. Four out of my eight siblings have RP. If you are young there is great hope for you.
What is RPNM????
@@jackccrofootjr7228 sorry it is just plain RP, which stands for retinitis pigmentosa
I’m 13 and I’m starting to go blind due to type 1 diabetes.
I’ve had a hard life and I don’t know if I’d be able to carry on if I couldn’t see this world anymore. Is my life really going to be worth living if I can’t see the beauty of this world or the people I love?
I was diagnosed by an optometrist last year
I am going to see an ophthalmologist at some point this year for confirmation, but it sucks knowing that I most likely have a limited amount of time to make art...
-I don't think I see the notation for the other eye doctor's channel you planned on mentioning...
Dr David Armstrong. A friend of mine and low vision doctor who is excellent. I’m on my phone but will put a link to his channel in the description when I get back to a desktop.
ua-cam.com/channels/nbQu4NC-oAnf-UMeUngl0Q.html Dr David Armstrong's Channel!
@@EyeSchoolwithDrD thank you so much!
I m suffer with RP
Dear Sir,,, I am 22+ I am seeing 6/9 with glasses,,Sir I am RP patient,,Sir is there any treatment for RP disease? Sir RP is not 100% better but is there any treatment so that the power does not decrease and peripheral vision returns?
A person with RP(since childhood) become completely blind??
Plz answer 🙏
My father had this , and his left eye is totally blind now and the right has only 20% vision , may i ask if eye transplant can bring his vision back ?
I’m not the expert on RP treatments. I know retinal specialists have done surgery that helps restore some sight. Another commenter had some really great insight into research being done and hope for the disease. I can also look into future collaboration videos with subject matter experts if that’s something of interest!
@@EyeSchoolwithDrD Would you please share with the Medical Community the name of the surgery that helps restore some of the sight lost in RP??? Since at this time we are unaware of any such treatment. They only FDA approved treatment for RP at this time is gene segment RPE65 insertion using AAV carrier injected under the retina for Leber's Congenital Amaurosis Type 2!!! Which supplies a corrected RPE65 gene to stop further degeneration, What has been lost is gone forever.
May God help you.Your disease is opposite to mine .While your losing your peripherial vision and keeping your central .I am losing the central vision.
I am sac for you because your vision loss is berger than mine and i am wishing you the best for the future.
Dr D., my mom has this she is 64 and has had it since childhood. She once had a surgery where she told me they removed her eyes as a child. She's in bad shape both physically(eyes) and mentally over this. What can she try or can we do to help her? Thank you
I am 34 and have it too my mother and father don't even wear glasses.
I have it and i don't even wear glasses
I've got RPGR, its not amazing
But now there’s stem cell therapy. I have hope for the blind.
At this time Stem Cell Therapy is only available in approved Clinical Trials and none have been made commercially available.
Sometimes with retinitis pigmentosa rp you can also be born with usher syndrome and you are hard to hear as my husband has been diagnosed he was diagnosed two to three years ago that he had both right now his eye or stable but he takes a lot of vitamins he is 39 years old
I have RP since birth it is difficult to live with I have good days and bad days. but I’m still going forward. now I am well known artist here in my country I make fine art, and also animations I try not to think about my disease that much andand I try to think in a positive matter.
positive vibes attract positivity
He's 21
Why did he need several eye tests ?? Isn't RP diagnosed at the first time ?
Hi, what is the name of cataract associated with Retinitis Pigmentosa that you mentioned at the end of the video?
Posterior Supcapsular Cataract!
@@EyeSchoolwithDrD Thank you, Dr. D, for replying back to me.
I have RP too. So I feel ya
I know bro the struggle is real
Me too
Hi, you mentioned retinitis pigmentosa is progressive which is different that those born with a bit of extra pigment. I've had pigment noted at the back of my eye since a child and saw an ophthalmologist who said I was born with it dont worry. My most recent eye exam at 28 the optician noted the pigmentation round the back of my eye. It's still very far back it cant be seen on fundus imagining (which looks very healthy) but can be seen when they have me look very far over and use the circular microscope and slit lamp. It's the same in both eyes and my mum was born with the extra pigment too.
The fact it's nearly all around the back of my eyes does that mean it's actually retinitus pigmentosa? I havent noticed and reduction in night vision or peripheral but I do get the odd flashes in the dark
Hi! So not all pigment is considered retinitis pigmentosa and not even all RP progresses the same way. I have a ton of patients with pigment in their peripheral retina that is NOT RP. Also, RP can be genetically inherited in different forms. Sometimes the inheritance leads to a strong presentation meaning very prolific and causing blindness quickly. However, there are patients who have a segmented portion in their retina of RP that doesn't progress. I think if you have RP or signs of pigment PLUS the other symptoms like night driving issues its important to get to a specialist who can perform the genetic testing and specialized clinical tests as well. This video was so short it was impossible to convey all of that. Your longstanding pigment without visual changes or night driving issues is not something to worry about in terms of RP. As always, default to your eye care providers advice and let them know immediately if you have vision changes including flashes, floaters, loss of vision.
@@EyeSchoolwithDrD thank you. I did go and get my eyes checked a 2nd time and this opticians said I had some pigment bilaterally but the fact it's so far over and unchanged all these years shes not concerned and to just monitor it yearly. I did develop a new floater so I got that checked and was fine. Can I ask is it quite common to have bilateral pigment that far over and it just be a congenital thing that causes no problems? I read about familiar adenomatous polyposis also when looking up pigment and got worried when it said its normally bilateral pigment in the eyes but from the images I've seen you can see it in the fundus photo and my photos show very healthy eyes with no pigment there. I dont really ask when I go but one optician described it as blue and brown pigment sort of like the shapes that form on a dry dessert floor so I guess not round but then another optician described it as dots. You said you've got a ton of patients with pigment, have you found it can be normal to be bilateral or should I seek another opinion. Thanks so much for any advice
@@kirimarshall5561 how are you now
Has anyone come across gene EYS in RP. ?
No but my dad yes
@@SolitudeD-K how has RP developed over years etc??
I have this
Are you doing alright
Dr. Denton, please go back and properly research the pathophysiology of Inherited Retinal Dystrophies (old name , RP) The information you present in this video is incorrect. You misunderstand the Retinal Pigmented Epithelium. The pigment (Melanin) is there to help absorb excess light scatter and damage from UV Radiation, causing the formation of free radicals. When the RPE is overburdened attempting to remove metabolic waste products and dead rods and cones, it ruptures and spills its Melanin into the surrounding retinal tissues. That is what causes the retinal staining seen in IRD's. (The so-called bone spicule looking lesions seen on and in the retina.). As the patients loose more and more RPE cells there are fewer and fewer to support the rods and cones nutritions and waste removal and lead to further cellular apoptosis of Photoreceptors.
Also, go back and review "RPE Hyperplasia" it is a separate entity from IRD's (RP)!!!
The available retinal prosthesis available at this time DO NOT restore Functional Vision, please renew your understanding of Functional Vision. That is why they have not caught on at this time.
Please Read this Explanation of RP: Don't let any terms discourage you, just follow the main concepts.
Vision detection is a long series of proteins that work in concert to effect an electrical signal that is carried away from the nerves in the retina, eventually joining into the Optic Nerve and carried to the brain for interpretation.
If any protein is incorrectly coded (the protein recipe is written on our DNA segments), it can cause that pathway to eventually fail at any point along its journey.
Inherited Retinal Dystrophies (or Diseases) are a disease of DNA mis-coding (incorrect recipes) being passed from generation to generation through all of the forms of inheritance. There are also spontaneous mis-codings that rarely happen, because of chemicals, radiation, or a mistakes during ongoing DNA replication within the Cell Nucleus, etc.
The Retina has several layers. The main layers of importance to understand in RP (IRD) are the "Photoreceptor Layer" and its underlying "Retinal Pigmented Epithelium Layer (RPE)."
The Photoreceptor Layer" is made up of Rods (for low light detection in black, grey or white) and the Cones (normally 3 types , red, blue and green) for Color detection. The brain determines the secondary and tertiary colors and hues (ex: purple) by how strongly each of the 3 cone types are stimulated. If for example, the blue and red cones are stimulated the brain interprets it as purple.
They are collectively known as PHOTORECEPTORS, it takes one photon of light to stimulate a Rod Receptor and several hundred photons to stimulate a Cone Photoreceptor.
Think of the Retina as a bullseye target. with rings. The outer ring is almost entirely Rods, as you move into the central rings Cone are intermingled with the Rods. Until you reach the inner most ring (the Macula as it gives us our greatest Central Vision) which is almost entirely Cones and within the central most point of the Macula there is a pit (the Fovea) of solid Cones with no rods. That is the area of our eye that gives us the best visual acuity (focus) and detection of fine movement. And because the Macula and the Fovea are almost entirely Cones, that is why in IRD's we are still able to have color detection and somewhat preserved vision until they are the last to fail, due to overwhelming failure of the RPE.
Oddly enough, the Rods and Cone actually point toward the back of the eye and are in intimate contact with the single cell protective layer (RPE) that wraps around the inside of the eye except in the front near the lens and iris.
The (RPE) Retinal Pigmented Epithelium:
This one layer thick cell wrap has 6 sided shaped cells (like a bee hive honeycomb) each of the sides has a thick coating of a cellular glue at the inner edge, between each cell that causes a seal or tight barrier of protection between the cells and thus protects the retina from the underlying blood vessel rich layer (the Choroid). This is what forms the "Blood-Retinal Barrier" preventing anything of a certain size, from entering the internal eye. (ex: autoimmune antibodies that would attack and destroy the eye. That is why in some clinical trials of injecting DNA segments or even stem cells, in hopes to repair mis-coded DNA, there is no autoimmune rejection.)
The RPE is extremely important in its function to supply nutrition to the Retina and carry away waste from the highly metabolically active rods and cones. The RPE has finger like projections (microvilli) that extend from the surface of the RPE Cell into and around the Rods and Cones to help maintain an environment to feed, protect and remove waste.
The RPE also makes certain proteins necessary for vision. ex: the protein that is mis-coded (RPE65 gene) in Leber's Congenital Amaurosis Type 2 [LCA2] (that gene carries the message how to make retinoid isomerohydrolase within the RPE).
Each RPE Cell also contains hundreds of granules of a pigment called "Melanin." These pigmented cells help prevent the rods and cones from being overstimulated by the light entering the eye. The Melanin absorbs the excess light and prevents light scatter all of which would "white out" the retina if not dampened by the Melanin in the RPE Cells (like a snow storm white out). The Melanin also absorbs damaging UV light that can can result in free radicals that bind with the intracellular oxygen of the RPE Cells, leading to RPE Cell death.
In RP the waste removal done by the RPE can be overwhelmed by the rods & cones dying off and damaging the RPE in the process of trying to remove the resulting waste (in addition to other causes). This damage results in the RPE Cells rupturing and spilling their "Melanin Pigments" into the surrounding Retinal Layers. This is what causes the darkened splotches or spots on the retina that is diagnostic of RP.
Also, the Rods secrete a "neuroprotective substance" that coats the nearby cones (Rod-derived cone viability factor (RdCVF), so that when the Rods die the nearby cones also die and add to the workload of the RPE to remove the waste leading to more of the RPE Cells rupturing, also spilling their Melanin Pigment.
After much of the RPE is destroyed, it is no longer able to keep up nourishing the remaining Rods and Cones so that more and more Rods die, mostly the Rods which are in the highest numbers at the outside circle of the Retina. Since the Rods give us night vision and our peripheral vision. The early symptoms of RP are "loss of night vision" and "narrowed visual field" (tunnel vision). And of course the appearance of the "Melanin staining of the Retina". These are the 3 cardinal symptoms of RP or Inherited Retinal Dystrophies/Diseases (IRD's is the new name, because we now know that RP is not just one disease but each type having a different genetic cause.)
There is much more to this process depending on the genetic causes. But, the end result is almost always the same...Photoreceptor Death, RPE destruction (spilling the Visual Pigment Melanin) and increasing night vision loss, lead to increasing overall visual failure with time.
I apologize if I seem harsh but I so fatigue of all of the misinformation about RP that is being propagated on youtube and facebook. Please do better.
Im not going blind?
❤️❤️❤️❤️
Please speak in hindi
there is no way i can speak in hindi. i'm so sorry!
If anyone is having RP , can they get marriage with anyone?
Why wouldn’t they be able to ?