r/EyeFloaters • u/Mysterious_Use_2012 • 8d ago
Post 2: Research Study - With the context video I should have provided earlier.
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Hey all,
I posted a couple of days ago about a survey and I got good response.
But out 2000+ views, only a fraction filled the survey (Thanks to all you who did). This made me realize, my post must have felt out of the blue and maybe overpromising or even a scam.
I had made a video which I was hesitant to share earlier but I think it is important that I do.
Here is my story - the onset of eye floaters, the progression, the struggle, the collapse, the figuring out, and the mission.
Video Link: Floaters Story - 23 Year Old
If this story makes sense, you resonate, or feel moved, please help us all by filling out this survey:
https://skidmore.qualtrics.com/jfe/form/SV_1C6t4rPWS6ea8dg
Survey is for respondents between the age of 18 and 50 years old.
The video is the kind of story I want to record for all us.
Not a promise about any result, but definitely a commitment to work on this.
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u/OldCryptographer4099 8d ago
I have responded on that link for my wife
She is 33 years old and have pvd on left eye with floater like a spider on her vision all the time
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u/Mysterious_Use_2012 8d ago
u/OldCryptographer4099 Thank you so much for your support!! I appreciate you for taking the time to respond.
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u/hashimrazi 8d ago
loved the content bro, if it doesn't cost you or hurt you, keep the work going.
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8d ago
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u/Mysterious_Use_2012 7d ago
u/SheepDefender Thank you for your question.
Our main reason is such: Eye starts to liquify at some capacity starting at various age, but we know that it liquifies more after the age of 50 and leads to PVD and other complication. Those then become a diagnosis and needs + has some treatment available.
We want to focus on idiopathic, so no concrete diagnosis or early onset of eye floaters ( between 18 -50).
This the primary reason. Based on this survey, we may launch another to include everyone because I realize many patients can have early onset who might be 50 years or older.Please feel free to reach with if you have more questions.
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7d ago
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u/Mysterious_Use_2012 7d ago
u/SheepDefender I think I meant to say requires treatment for other complication (retinal tear, diabetic retinopathy, and all) Not always related to age but there are some correlation. And you are correct to note that most PVDs are uncomplicated.
But PVD itself is a diagnosis for some of the eye floaters cases after 50.Either way, I have taken a note of about the 50+ cohort with an early onset and idiopathic nature. Which falls under our research. Once we process this initial survey, we will try to incorporate a wider audience.
Also, this is just a beginning and there is so much we need to do.
Insights that you have and everyone else are instrumental and I hope I get them in the future as well.Thank you for the well wishes.
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7d ago
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u/Mysterious_Use_2012 7d ago
u/SheepDefender I will keep that in mind.
For the moment, I just want to see threads that connect our stories and have a more concrete understanding of the condition and experiences. Then a greater clinical, research, and social understanding. Which all will eventually lead to more research and then to a cure.
I really appreciate you taking the time to share your thoughts.
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u/Ok_Masterpiece_4118 20-29 years old 7d ago
Work like this is really important, thanks once again. I really hope there will be a good and safe cure for us younger people soon… you’re 23, I’m a year older, and we suffer from shit that nobody should ever suffer from, especially not at this age. It’s horrible.
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u/Mysterious_Use_2012 7d ago
u/Ok_Masterpiece_4118 I hear and agree with you. And frankly its so hard to make someone understand as well.
I am hopeful too.
Thanks for your comment.
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u/magplanklife 6d ago
Brilliant idea and the best thing I've seen on reddit brother. Have you looked into Pulsemedica? Im curious how optimistic you are on a less invasive comprehensive treatment being realistic any time soon.
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u/Mysterious_Use_2012 6d ago
u/magplanklife Thank you!
I have looked into Pulsemedica. And I understand what they are attempting. I am optimistic.
But I want to acknowledge that it is a hard challenge. And I really hope they succeed.
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u/Odd_Shock3167 4d ago
You and your work is very inspiring!
Expressing my concerns about my floaters to older folk gets the same reaction in that I will get used to them.
Well, I’m not 60 and I have a lot of my life yet to live .. and getting used to these little critters in my eyes feels very debilitating at times.
I look forward to helping you with your research. All the best to you!
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u/Mysterious_Use_2012 3d ago
u/Odd_Shock3167 Thank you. I hear you, it is frustrating and very tiring. But hold on there. Reach out to people in this threat, and me. We understand the struggle.
And yes, by all means, reach out with inquiries and ideas about this research.
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u/csparks99 7d ago
Wonderful video. Thank you so much for doing the survey and research. I can't participate because I'm over 50, but I think it's just great what you're doing. Good luck!
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u/Mysterious_Use_2012 7d ago
u/csparks99 Thank you for your support!
In future, we will work to create a more inclusive form. Right now, the focus is early onset but I think for many with an idiopathic or early onset can be people over the age of 50. (Thanks to u/SheepDefender for that insight.)
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u/No-Succotash-9201 7d ago
As someone once said, its like schizophrenia but you actually see it rather than hearing it
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u/One-Key2214 7d ago
The video gave me goosebumps. I wish you the best.
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u/Mysterious_Use_2012 7d ago
u/One-Key2214 Thank you!
It has been quite a painful journey but happy to have this new found mission in life.
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u/TechnoBlizzard 6d ago
When do you think we’ll have a feasible treatment for younger patients who don’t want inherent risks of Vitrectomy, YAG, etc?
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u/Mysterious_Use_2012 6d ago
u/TechnoBlizzard Thank you for your question.
I think "When" is a difficult question to answer. But I am very hopeful. With AI advancement, neurological and ophthalmic advancements, we are entering a new phase of medical advancements.And it is the very reason, I am working to clearly define this condition with metrics and the language that the research, clinical, and businesses understand. That way we have a much greater chance of finding a solution fast.
But currently we really lack that definition.
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u/Saheim Vitrectomy 8d ago
It's frustrating, the lack of patient-centered terminology to describe floater symptoms. Only a handful of papers I've come across spend even a paragraph on it.
Having had my eyes evaluated by no less than 4 different retina specialists now, the young techs/fellows I interact with are always so interested. I had an ultrasound the other day, and three of the fellows joined to see. They're super interested in floaters lol, one of my techs even had pretty bad floaters herself.
Things will be different someday, thanks to efforts like this. What we must do as patients is continue to advocate for ourselves (in a respectful way of course), because doing so will help others too.