Anyone here have Fuch's Dystrophy?

My name is Carole. I had cataract surgery in both eyes in June 2012. I was told by the surgeon prior to the surgery that I had FD. Six months after the surgery, I developed secondary cataracts which were treated by the same surgeon. At that time, I asked him why I felt discomfort in my left eye. He said it was due to how the incision healed. In the next two years, the discomfort in my left eye increase. Also, my vision was not clear like it was following the cataract surgery. I was referred to a cornea specialist who confirmed the FD in both eyes and suggested drops. They help some of the time. By 2016 my distance vision was worse (blurry) in both eyes and discomfort in left eye had increased. I had a cornea specialist in Chicago review my case. He said I had blisters on my left cornea due to the swelling and this was due to the FD. This was causing the discomfort.
My father had FD and a cornea transplant in 1996. I not anxious to have more surgery. Has anyone hade any experience with DSAEK or DMEK?

I have an appointment with a doctor at Mayo Clinic the end of July regarding my diagnosis.

Hi Carole
I hope your visit went well the end of July.
I'm Rachel and when I was 40 (2011) I was tested for Fuch's dystrophy due to my father having it. His diagnosis was over looked for many years therefore he suffered longer than he should have. He begged me to get tested because its hereditary. My vision had always been poor so I wore tri-focals in early 30's. Knew things weren't right. Surely I tested positive. After my diagnosis, I was able to get 3 more years out of my eyes before things became intolerable. My symptoms were, deterioration of vision regardless of strongest eye glass lenses. Could not read Street signs, computer print, small print, patterns, numbers. I strained and became dizzy and could not focus. Bright lights, contrasting light, overhead lights did me in. Gray dreary days were the worse. Windy days, fans or going outside from indoors made my eyes water and run. Mornings were a blur and foggy, took long time to regain focus. Laser or flashes of lights (movies/fireworks) gave me pain. The less sleep I got, the worse my eyes responded. In 2013 my cornea specialist scheduled me for 2 cataracts surgeries followed by 2 partial thickness corneal transplants. My father had needed 2 full thickness transplants but progress had been made in this area when it was my turn. I didn't want to be set back for too long so I pushed and had all procedures done in under 5 months (a working Mom and needed to get these baby blues ready for my kids sports seasons).
Cataracts were pretty simple and 1 transplant was as simple as could be expected however, my 2nd transplant was a bit more complicated so, I was left with lasting scar tissue and one pupil smaller than the other. All in all, I got through it and my vision was perfectly restored!!!! BLESS my Drs heart because it is without a doubt, scary stuff to go through. Along the way I had several loose stitches (normal) which are very agitating and need to easily be pulled out. 4 years after my surgeries I developed secondary cataracts which created double and blurred vision....easy laser procedure to fix.
Today, 6 years later, I am still incredibly grateful for my vision. My only remaining and lasting problem is sensitivity to light. Still can't watch fireworks. Can't go to a concert because of lasers and lights. Can't do movie theaters. Have to wear sunglasses and a hat with brim in all artificial lighting situations...basketball games, stores, arenas etc... Hate winter because natural light is shortened. Im told it's lasting effects from my scar tissue, unique to my personal experience. I still don't settle for that but no-one has any more answers. So, for 6 years I have struggled with night driving and finally gave it up last year (age 48), not happy!!!
At least I can see and for that I remain incredibly grateful. So sorry for the book. I hope it may have helped you or someone moving forward. The disease is rare and we must be some special people! Procedures have come so far and an experienced cornea specialist is all you need for the right help. Best of luck to you and I'm happy to answer any questions you may have.

I was diagnosed with Fuchs after cataract surgery in both eyes. My eyesight was worse after the C surgery...vision, cloudiness, loss of peripheral vision, ghosting, severe sensitivity to light and periodic shooting pain in my right eye. I was only diagnosed with Fuchs and told to use MURO ointment at night, in April 2019. I will seek out a Fuchs specialist after my next checkup with the group who diagnosed my Fuchs. That appointment is scheduled for December.

I strongly recommend your joining the Fuchs Foundation Group.

That is good to know. Thank you. I will look into it. All the best to you.

@grmnancy - how has the ointment been for you?

<p><strong>Fuchs Disease</strong></p><p>My husband has recently been diagnosed with Fuchs. No treatment at present excep eye drops. Anyone else dealing with this condition?</p>

Hello @marymaurer

Mayo Connect does have a discussion about this eye disorder, here is the link, https://connect.mayoclinic.org/discussion/anyone-here-have-fuchs-dystrophy/?pg=2#comment-241146.

To find out what is being said about this disorder with others, please click on the link above and read about the experiences of others.

I also found some information on treatments and clinical trials at Mayo Clinic. Here is the link to that information,
https://www.mayoclinic.org/diseases-conditions/fuchs-dystrophy/doctors-departments/ddc-20352733
While we wait for others to respond, could you share how your husband's disorder was diagnosed? What kind of symptoms is he having and what type of tests were used to come up with this diagnosis?

@marymaurer You are looking to connect with members that have experience with Fuchs.

You will notice that I moved your question to a previous discussion @hopeful33250 may be a good resource for you. I did this so you could connect with members like @th1 @barbb @sundance6 @joyces @nla4625 @jaguar737 @dablues in a central location.

You mentioned that you husband is not receiving treatment, with the exception of eye drops. May I ask if your provider said that drops are the only treatment available?

He has a knowledgeable provider... knows options. He also has cataracts but is delaying
Surgery because of possibility of negative outcome.

I have Fuchs in both eyes. I was told 10 years ago that I would get it as mom had a full-transplant.

Post-Covid I was diagnosed in both eyes, the left being way worse than the right as it also has a cataract.

Would appreciate hearing from anyone with Fuchs, especially pre-surgery. Many thanks. Marianne