Blind and Visually Impaired Community
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X-linked Retinitis pigmentosa - anyone able to share their experience with progression? (self.Blind)
submitted by snicklefritz1991
Hey everyone
I've got X lined RP and I'm 29. I think my vision has gotten a lot worse fairly rapidly and want to know what to expect next.
I was diagnosed at 14 so I've had a fairly steady decline over the years and adapted along the way. There's a massive gap in research around XLRP progression but I know it's a severe form and generally leads to earlier vision loss than other RP types.
I've started getting pretty stressed out in groups/crowds because I can't see the people/body language of those around me. I also can't seem to navigate as well during the day and feel like a lot of new spaces feel kind of like a puzzle to create a layout in my head... If that makes sense!
Is there anyone out there who could shed any light on their own experience or decent data showing ages and stages of vision loss?
Much appreciated in advance!
I've got X lined RP and I'm 29. I think my vision has gotten a lot worse fairly rapidly and want to know what to expect next.
I was diagnosed at 14 so I've had a fairly steady decline over the years and adapted along the way. There's a massive gap in research around XLRP progression but I know it's a severe form and generally leads to earlier vision loss than other RP types.
I've started getting pretty stressed out in groups/crowds because I can't see the people/body language of those around me. I also can't seem to navigate as well during the day and feel like a lot of new spaces feel kind of like a puzzle to create a layout in my head... If that makes sense!
Is there anyone out there who could shed any light on their own experience or decent data showing ages and stages of vision loss?
Much appreciated in advance!
DrillInstructorJan 2 points 2y ago
I would try not to torture yourself with this stuff because it seems totally random. I know someone who went from diagnosis to barely light perception in seven months. The medical people involved said it was unusual and that people with exactly the same diagnosis are still driving in their 30s. Basically, que sera sera?
meeowth 2 points 2y ago
No 2 people in my family have the same rp progression. Still waiting for genetic test results from a free foundation
StuckInPennsylvania 2 points 2y ago
Everything I looked at seems to indicate that, while progressive, it varies by individual. It also seems to be that case that vision loss is not linear. It seems to increase/decrease speed for reasons unknown. There could be long periods of stability
Have you looked into any of the gene therapy clinical trials? You fit the age.
Have you looked into any of the gene therapy clinical trials? You fit the age.
[deleted] 1 points 1y ago
[removed]
DevelopmentJazzlike2 1 points 1y ago
I’m just curious, how bad was your vision at 14? I’m 20 and going through similar stress. For reference my vision is poor enough I never got a chance to drive
bolognagoose 1 points 1y ago
I’m 27, was diagnosed at ~14. It’s been a very gradual decline for me. Still driving, still feel like my visual field isn’t constructed in a noticeable way. Cannot drive at night and haven’t been for the last 5ish years. Consider myself lucky but am terrified for a rapid decline that many people with XLRP I believe experience around this age. Will see what happens 🤷🏽♂️
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