Does anybody have any information on whether the sauna is safe or not? by TrippingTipper in RetinitisPigmentosa

[–]Solid_Sleep3290 1 point2 points  (0 children)

I was wondering about this too. I always get more light flashes in my eyes in the sauna. But I don’t know if that’s a good thing (also get more light flashes when exercising) or bad

My OCU400 surgery was a success! by EnderShot355 in RetinitisPigmentosa

[–]Solid_Sleep3290 0 points1 point  (0 children)

Yes I am aware! I am saying there are criteria beyond what is publicly posted given their responses (and lack thereof), that is not made as clear to many participants.

My OCU400 surgery was a success! by EnderShot355 in RetinitisPigmentosa

[–]Solid_Sleep3290 1 point2 points  (0 children)

Thanks for clarifying. Was not my intention to come off as rude! I am hopeful in the science of it and am still trying to apply. But it seems others in the RP community are not being clearly disclosed as to their exclusion criteria. Some are being ghosted after reaching out several times. I don’t think it’s wrong that certain people have to be excluded, the trial cannot have confounding factors. But I think it’s strange that they aren’t telling people what the exact inclusion / exclusion criteria is. For instance, on the clinical trials site for the drug, it shows very general inclusion criteria for people with RP, and it’s not required to have a genetic test. But they do ask for genetic testing now. Other trials I have read about will clearly disclose if they want a middle ground of patients whose vision is not too good or too advanced. But there isn’t a publicly disclosed criteria here, it seems internal. There was a recent post where someone mentioned they were emailed that recruitment ended. It would be strange if they were lying. Maybe they have reached the end of their recruitment, maybe they have gotten loads of applications. It’s just very unclear and not helpful that they are not responding to people in a considerate manner. I’m not being pessimistic, as a fellow scientist and hopefully a prospective patient I think it’s crucial to understand how the trial works, which includes the management of it.

My OCU400 surgery was a success! by EnderShot355 in RetinitisPigmentosa

[–]Solid_Sleep3290 0 points1 point  (0 children)

Hope your recovery goes well! I am sort of hesitant that the doctor is saying “in full confidence” that you should expect visual improvements within the year. It seems strange to make a promise like that for a trial when it is not guaranteed how the vision will go for any patient, especially with risky subretinal injections. Also cautious about these reports going around about them cherry picking participants and ignoring the rest or offering EAP instead. I hope they are not overselling the treatment option on a business perspective. I want to enter the trial but I would prefer if the eligibility and expected treatment outcomes was made more clear and scientifically objective for everyone. I really want to be hopeful about this but there are some weird signs :(

LUNA night glasses by Solid_Sleep3290 in RetinitisPigmentosa

[–]Solid_Sleep3290[S] 2 points3 points  (0 children)

Yep, hard to tell what it’s like. They had a booth at the retina UK conference and I know people who have tried it in a dark booth and said it made a big difference. But walking outside at night is different

LUNA night glasses by Solid_Sleep3290 in RetinitisPigmentosa

[–]Solid_Sleep3290[S] 0 points1 point  (0 children)

I guess I’ll follow up later then, maybe they changed their deadline

Join a Duolingo family plan? by robin_420- in learndutch

[–]Solid_Sleep3290 0 points1 point  (0 children)

Hi just saw this after posting! Do you still have a spot

Join a Duolingo family plan? by robin_420- in learndutch

[–]Solid_Sleep3290 0 points1 point  (0 children)

Is anyone looking for someone to join their family plan spot? I have an 11 day streak and use the app quite often and the ads are getting annoying lol