I hope you all found this lesson helpful! To learn about Retinal Detachment, please check out my new lesson here! ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-HjpcwHpFBRU.html
I would highly recommend this channel in learning disease process. This time I don't want to miss any lessons for coding skills. Sir, thank you. This is so helpful to me.
I really hope a cure is found soon, this condition can weigh your mental health down so much and as time goes on I lose more and more hope for a potential cure It saddens me that I probably won’t be able to drive, I can’t normally go out at night without guiding It’s generally tiring At this point I fear going fully blind way lord than death at this point
Try Dr. Sebi method. Everything is reversible. They lied to us about it’s not to keep us slave and a rip us off. Try going natural 💯, it won’t cost to try.
Since we go blind slowly, you will be surprised at your ability to adapt and compensate. It is not a grand party, but the journey is tolerable. Driving was extremely difficult to stop, but now we have Uber and Lyft to get us places and online grocery shopping with home delivery. 72 yrs old. Practiced Anesthesia for 30+ yrs. I had to retire at age 50 with the loss of my Driver's License. I am down to less than 2 degrees of vision. Live alone and care for myself. It is doable but you have to prepare as you lose vision. Divorced age 50yr, wife chose to start an affair and emptied my retirement and bank accounts with the help of her Accountant boyfriend. So, i started all over financially devastated but thrilled to be rid of her. Acceptance is an ongoing process. because just when you have adjusted, you lose more vision and have to readapt. But, you have to not feel sorry for yourself and keep adapting.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
My dad and his sister and grandpa have this. His sister has it worse but he is still legally blind, field of vision has been diminished from 180* to 20*. It sad
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
PLEASE READ!!! I was diagnosed last week with RP and honestly never heard of it before in my life before then. Obviously pretty devastated by the news but seems to be moving at a very slow pace. I’ve done so much research and all I keep seeing is there is no cure and everyone asking for help. So this is the point of this post. I live here in NYC and I was referred to Colombia University where they have just very very recently started treatments for this . Nobody really knows about it and apparently the only place in the world right now. They have 7 doctors all together . 2 out of the 7 specialize just in genetic testing but the other 5 work with everybody. I have a appointment with them at the end of the month so right now I have no idea about what they do or test. But I’m hopeful and I think this is a huge break for us . Please comment or ask any questions . I want to help as many people with it as I can because I was blessed enough to be in the same city but I know everybody is not the fortunate ! I will also keep updates and going to start making videos with my journey !
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
my 16 yr old son was diagnosed with this when he was 11 I really worry for him as he gets older I hope they are able to find a successful therapies or cure.
I'm 50 years old I have RP really bad.. my cataracts were getting bad so I had to go to a new eye doctor. The most frustrating part they had no idea how to deal with me they've never had somebody with eyes like mine come in 🤣🤣 it was a very very frustrating experience explain everything to five different eye doctors ten different eye doctor assistance that have no clue about our RP.. most eye doctors are like a cattle vall does eye doctors really don't give two craps about you or trying to help .. just healthcare in general is like this now a days .. they just see you as a dollar sign
does anyone has floater bc of this ? ....... I started to have floaters in my both eyes. then few months later, I was diagnosed with RP and I start to have flashlights in my eyes during sunlight and at night......rn I have floaters and the symptoms of flashlight or something in my daily life ....I can't use computer for a long time...it makes my eyes so uncomfortable and I even quit my job bc of this....God I'm only 22
@@KinGizzard I m born whit r.p. learn how to live with it,but still sometimes is hard. Still driving car,on job driving forklift and just got my motorcycle learner licence.i don't let r.p.stop me in some thinks wich I like and wanna do. Hope is all what we have. We have to stay strong 💪 🙏👍🍻 Hope is all what we have.
@@alenbole8633 what do u think about this new smart glasses that pops out in the market. do u think it will help us? because we know that normal glasses won't work for us specially at night
My partner has Tulp1 RP. And I have SO many questions. I found this video by chance. And he's looking at treatments to help at least stabilize it. And All I can find is Tulp1 is referred to as LCA15. He has rp14. And the only treatment I can find is gene therapy for RPE65. Are they all co-related? And would any form of treatment help him in any way shape or form? I'm honestly not expecting any answer but lord I would a dumbed down answer/guidance. I have learned so much about this disease
Arrrrrg! I get so frusterated everyday, every time i loose something that is right in front of me, hit my head, walk into people and things, And my drivers license expired. Not that i drive, its the reality of how much RP sucks and is trying to ruin me
I understand I have it to. I just retired from teaching/coaching and it’s getting worse. Is there any support groups you know of just feel like I’m doing this all alone
@@kenyabrantley1673Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
I am 36 now and am diagnosed with RP in my 20s. I do not seem to have night blindness which is one of the first symptoms, but I do noticed that my peripheral vision is not so good. May I know what your experience is in term of night vision and how different is your vision from being 30 and now. Thank you!
Dr. JJ does a good job with his videos and is to be commended. Regarding why the Cone Photoreceptors die off after the Rods. The Rods secrete a (Rod Derived Cone Viability Factor) that protects the Cones from Apoptosis, cell death. As stated by Dr. JJ, Cones provide Color recognition. But also the central cones provide fine movement recognition and fine focus. Fortunately because the cones make up almost all of the Macula/Fovea, They allow most RP Pts. to have somewhat preserved functional central vision even when the visual field is narrowed to 5 degrees (normal 180 degrees). Again, I would like to thank Dr. JJ for his many excellent and well done videos. I have recommended them to patients.
Thank you whole-heartedly! Beginning a research paper on this, and this was just the right amount of information to get me started diving into reviews :)
Thank you! My father and two of his siblings have RP and I was convinced I had it until my parents finally took me to get tested at the NIH when I was 17. i didn't have it, just really anxious I guess. My sister doesn't have it either but one of my first cousins does.
I think genetic testing helps you determine the type of RP you have, some types have more treatment available than others from what I've read. But you can get tested to see if you have it without genetic testing.
@@killherkayMyself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
That treatment is far off in the future. At present the emphysis is on Adeno-Associated Virus to carry the corrected gene segment into the eye to hopefully be incorporated into the cell using CRSPR-Cas 9, to then allow the correct vision proteins to be manufactured. At this time there is only one commercially approved AAV gene segment treatment. It is for Leber's Congenital Amaurosis type 2. LCA2 makes up a very small segment of RP patients.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
I have also have retina pigmentatosa . I am 22 years old . I have recently done my graduation in computer science . Can I pursue my career in IT field.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
Your last sentence in the narrative, ". It is actually a better prognosis in the autosomal dominant inherited retinitis pigmentosa" seems incorrect? A slip of the tongue, or I missed something?
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
what do u think about this new smart glasses that pops out in the market. do u think it will help us? because we know that normal glasses won't work for us specially at night
My dad had this along with cataracts. But he seemed fine for a very long time. He was 64 when he passed away and he still had his vision, just some trouble at night and loss of peripheral vision. Wish Crypr was used for this, I'll look up studies.
Myself and others have created a group focused on Retinitis Pigmentosa (RP). In this group, we share our personal experiences with the condition and post any news related to upcoming treatments. If you're interested in joining, please respond to this message, and we will add you to the group. You will become an important part of our community of individuals living with RP.
