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Anyone here have Fuch's Dystrophy?

Posted by Bettyann @bettyann, Dec 11, 2011

I would really like to hear from people who have Fuch's Dystrophy. I would especialloy appreciate hearing from those who have NOT yet had DSAEK surgery so far. This includes knowledge from those of you who have friends or relatives that might have Fuch's.
I was diagnosed with Fuch's (only in my Left eye) in July...it 'showed up' after my cataract surgery in that eye. Before that, I had no real problems in that eye (aside from the cloudiness caused by the cataract.
THANK YOU for any and all of your replies! =)

Interested in more discussions like this? Go to the Eye Conditions Support Group.

irinig | @irinig | Feb 11, 2023
In reply to @irinig "I hear the same…thank you for helping me. Have doctors traced FD to food & eating..." + (show)
@irinig

I hear the same…thank you for helping me. Have doctors traced FD to food & eating habits? I wonder if FD is just genetic or does it have to do with what we put in our bodies over the years…

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Irini,
The doctor monitoring your eyes, has he said anything about the heredity factor? Outside of this group I only know of one lady who has FD. It is scary but we must forge ahead and find solutions via these forums. 🙏💓Marianne

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raye | @raye | Feb 11, 2023
In reply to @irinig "I hear the same…thank you for helping me. Have doctors traced FD to food & eating..." + (show)
@irinig

I hear the same…thank you for helping me. Have doctors traced FD to food & eating habits? I wonder if FD is just genetic or does it have to do with what we put in our bodies over the years…

Jump to this post

Try googling Fuch’s Corneal Dystrophy & MGUS. I came across a PubMed article from NIH which informs the two are connected. I have MGUS, a condition caused by an excessive protein in my blood. Subsequent to that diagnosis my Opthamologist diagnosed Fuch’s. My hematologist had not known there was a connection but verified this during our appointment.

So far I’m fortunate to not be aware of any symptoms from either diagnosis. I do consistently practice a healthy lifestyle, though should exercise more.

I will now do some standing exercises outside in the morning light: always good for mood. While doing so I could well sing a little ditty about the “ head bone is connected to the neck bone…” because our bodily systems are related to each other in more ways than we know. Similarly each of us can find things to share and encourage each other.
May you be happily well.

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sharonfranks1119 | @sharonfranks1119 | Feb 11, 2023
In reply to @irinig "I think DMAEK is the procedure where the entire first line of sight lens is removed..." + (show)
@irinig

I think DMAEK is the procedure where the entire first line of sight lens is removed & the lens of a person who has donated their eyes, gives to people like us with FD. This is the procedure my mom had 10 years ago in her right eye. She still sees out of her right eye as the transplanted cornea works. Also a young man was good enough to donate his eyes into the eye bank.

DMEK, I am told by my ophthalmologist, is a newer procedure whereby new cells are placed inside the existing cornea and they can grow, healthily at times, sometimes not…I was told my left eye needs DMEK.

Hopefully this clarifies my last response? Many thanks Sharon. Kindly, Marianne

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Marianne, thank you for sharing your information. It certainly sounds like the DMEK is a more sophisticated approach to this problem, even if the technology is still being developed. Good luck to you if you do indeed have one or the other procedure. I’m hoping that my eyes will stay at this stage of FD and I won’t have to make the decision that you are facing. Best of luck, and again, thank you.

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1 reply
irinig | @irinig | Feb 11, 2023
In reply to @sharonfranks1119 "Marianne, thank you for sharing your information. It certainly sounds like the DMEK is a more..." + (show)
@sharonfranks1119

Marianne, thank you for sharing your information. It certainly sounds like the DMEK is a more sophisticated approach to this problem, even if the technology is still being developed. Good luck to you if you do indeed have one or the other procedure. I’m hoping that my eyes will stay at this stage of FD and I won’t have to make the decision that you are facing. Best of luck, and again, thank you.

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Of course Sharon, we are all in this together and hopefully with massive amounts of information we can all help solve this mysterious illness‼️🧿

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1 reply
irinig | @irinig | Feb 12, 2023
In reply to @irinig "Of course Sharon, we are all in this together and hopefully with massive amounts of information..." + (show)
@irinig

Of course Sharon, we are all in this together and hopefully with massive amounts of information we can all help solve this mysterious illness‼️🧿

Jump to this post

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jrl2023 | @jrl2023 | Feb 13, 2023

Me!! Diagnosed last week!! I’m needing cataract surgery on both eyes… otherwise I e never had any eye troubles… I’m 62, and now I have very dry eyes… gritty… and worsening vision

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irinig | @irinig | Mar 13, 2023

Hello! I have FD, an eye disease requiring frequent eye drops. Lately I find myself with ENT symptoms such as very frequent expectoration, eye pain, nose pain and throat issues. My doctor told me to stop the drops but my eyes hurt without them. Any ideas out there would be much appreciated, gratefully Marianne

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 17, 2023
In reply to @irinig "Hello! I have FD, an eye disease requiring frequent eye drops. Lately I find myself with..." + (show)
@irinig

Hello! I have FD, an eye disease requiring frequent eye drops. Lately I find myself with ENT symptoms such as very frequent expectoration, eye pain, nose pain and throat issues. My doctor told me to stop the drops but my eyes hurt without them. Any ideas out there would be much appreciated, gratefully Marianne

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@irinig, I'm tagging fellow Fuch's dystrophy members like @jrl2023 @sharonfranks1119 @raye @ccagack23 @grmnancy @marymaurer @jules359 @odreid to see if they having any experience or tips for you.

While your doctor recommended stopping the eye drops to slow the ENT symptoms like frequent expectoration, nose pain and throat issues, did they suggest what you can do to relieve the eye pain without the drops?

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1 reply
irinig | @irinig | Mar 17, 2023
In reply to @colleenyoung "@irinig, I'm tagging fellow Fuch's dystrophy members like @jrl2023 @sharonfranks1119 @raye @ccagack23 @grmnancy @marymaurer @jules359 @odreid..." + (show)
@colleenyoung

@irinig, I'm tagging fellow Fuch's dystrophy members like @jrl2023 @sharonfranks1119 @raye @ccagack23 @grmnancy @marymaurer @jules359 @odreid to see if they having any experience or tips for you.

While your doctor recommended stopping the eye drops to slow the ENT symptoms like frequent expectoration, nose pain and throat issues, did they suggest what you can do to relieve the eye pain without the drops?

Jump to this post

Hello Colleen. I am an ex-chemist & know that foreign objects in the body (brain, blood-brain barrier/ENT etc) affect all areas not just the immediate vicinity…Not surprised or shocked by my doctor’s response.

In my case I cut down the Muro 125 to 3x/day in both eyes (previously 4x in the bad eye) & sleep with Muro 125 cream in both eyes. It is uncomfortable & a pain though trial & error for sure, as I await for symptoms to ameliorate. I don’t like spitting like a truck driver & hate how my eyes sting, but I do it. My left ear rings a lot, my throat feels weird often…I have heard of worse symptoms. As yet, I am 64 & do not Medicare qualify until Sept. So until then…I will do the best I can & not let this illness get the better of me. Oddly it got way worse during the Covid. times…Any connection?

Thank you Colleen for your message to us FDs‼️

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1 reply
lindabg1751 | @lindabg1751 | Mar 27, 2023
In reply to @irinig "Hello Colleen. I am an ex-chemist & know that foreign objects in the body (brain, blood-brain..." + (show)
@irinig

Hello Colleen. I am an ex-chemist & know that foreign objects in the body (brain, blood-brain barrier/ENT etc) affect all areas not just the immediate vicinity…Not surprised or shocked by my doctor’s response.

In my case I cut down the Muro 125 to 3x/day in both eyes (previously 4x in the bad eye) & sleep with Muro 125 cream in both eyes. It is uncomfortable & a pain though trial & error for sure, as I await for symptoms to ameliorate. I don’t like spitting like a truck driver & hate how my eyes sting, but I do it. My left ear rings a lot, my throat feels weird often…I have heard of worse symptoms. As yet, I am 64 & do not Medicare qualify until Sept. So until then…I will do the best I can & not let this illness get the better of me. Oddly it got way worse during the Covid. times…Any connection?

Thank you Colleen for your message to us FDs‼️

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Hello Coleen, my name is Linda and I live in Phoenix, Arizona, and you have described my situation to a T..
I’ve had two corner transplants and my vision is still not good at all.. They had give me so many eye drops and eye creams that only make me sick and do not help my vision at all..
I feel like I have a shade over my eyes daily..
I have severe Migrains that make me sick almost daily.. I also feel like I’m chocking on constant drainage daily..
All I get from my Dr’s is more meds that keep me sick to the point I can’t function..
They only treat one problem instead of connecting the dots..
I’m being treated like a science project is what I feel..
I seriously need some help with this..
I have these symptoms on a daily basis and I’m not getting any relief..
Please help if you can..

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