Fuchs Dystrophy: Hi Does anyone know if... - Hughes Syndrome -...

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Fuchs Dystrophy

Molly100
Molly100

Hi

Does anyone know if 'Fuchs Dystrophy' is anything to do with the immune system and APS?

I went to have an eye test and was told that something at the back of my eye was coming apart! But the Optometrist seemed very casual about it all and said it was nothing to worry about.

I decided to pop back in after thinking about it and asked the receptionist about it she looked up my records and said that 'Fuchs Dystrophy' was written on my notes, so of course I came home and googled it!!!! Not good. I am waiting for a phone call tomorrow from the Optometrist so she can explain it all to me. I am already getting some of the symptoms but had not thought anything of it. I wake up in morning and my eyes are watery and sticky this goes on all morning they are also sore and blurry most of the day. I also get stabbing pains in them (all part of stage one of the condition). I have searched it on here and there is actually only one post so I am assuming that it is not part of APS. I had put alot of my symptoms down to dry eye as when I was diagnosed with APS I was told I did have dry eyes.

The final stage ends in blindness although it can take years for this to happen!!

Thanks :)

8 Replies
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MaryF
MaryFAdministrator

HI, I hope this is useful to you: rarediseases.info.nih.gov/d...

MaryF

HiddenThis reply has been deleted
Molly100
Molly100
in reply to Hidden

Thank you both very helpful.

christylee
christylee
in reply to Molly100

I also have both diseases, but do not think they are related. The end point is cornea transplants, but now a days there are transplants that have less chance of rejection and less time for recovery called DSEK and DMEK where just layers or a layer of the cornea is transplanted. My opthalmologist tells me there are also other treatments being researched.

I have also read about genetics of this, and all I can think,is maybe I am adopted like I thought when I was a kid, because no one in my family has ever had this. You should be followed by a corneal specialist,by the way. An optometrist will not be treating you-of course there is no treatment until....

I have Fuchs, diagnosed in 1999. The condition is genetic and very treatable with corneal transplant. The latest treatment is known as DMEK which seems to generally have remarkable outcomes. The procedure was started by Dr. Melles in the Netherlands. niios.com/melles-cornea-cli...

The procedure is complex and the best results happen with very experienced surgeons. I would urge you to find a corneal surgeon who handles lots of Fuchs patients and performs this procedure. I would also recommend that you join this forum which is by far the best I have ever come across. groups.io/g/FuchsFriends

My mother had the disease and never needed transplants. She died at age 86. I'm hoping I won't need them either but it is impossible to predict how it will progress. If you are in the U.S. there are a number of highly competent corneal doctors who perform DMEK. Perhaps you won't need it for years to come.

christylee
christylee
in reply to jcgc

Thank you for that information JC. I tried to join that group a few years back, and they did not respond to me. I have tried again. Hopefully,they will let me this time.

I have only just seen that I have never replied on this thread!

Just to update I have now seen an eye consultant and it has been confirmed I do have Fuchs, but no one in my family appears to have had it or was at least never diagnosed. The consultant told me to forget about it as it will only progress 10-20 years down the line. However I do get symptoms - wake in the morning to very blurry vision which takes a while to clear and very dry and then watery eyes. Light sensitivity as well.

But thanks for all the feed back on here.

HollyHeski
HollyHeskiAdministrator

Thanks for coming back to us, hopefully you are being monitored and the desease is stable, and not deteriorating?

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