Anyone here have Fuch's Dystrophy?

So incredibly sorry to hear of your suffering…

I have Fuchs Dystrophy. I am 64 & was diagnosed when I was 63. My mother has FD too. She had DSAEK surgery in 2014. Her surgeon told me I was going to get Fuchs, my brother no. Her DSAEK eye is now her good eye at 94 years of age as her other eye has FD and lots of it…I am a DMEK candidate probably for 2023 or 2024…Gratefully, Marianne

I’ve already had transplants of the corona on both eyes and to be honest, I’m still having lots of issues with focusing and headaches.
By the way my name is Linda..

I understand Linda and empathize. As bad as things are, altering the way we were made when put on planet earth is scary…I don’t look forward to eye surgery either. Compassionately, Marianne

Wondering if any of you with FD had ever been prescribed eye drops for increased inner ocular pressure, or for glaucoma?

I’m prescribed Alphagan which contains Benzalconium Chloride as a Preservative. Wondering if this might be bad for my corneas? Thanks for any replies

My name is Denise, and I am 65 years old. I was diagnosed with Fuchs Dystrophy 6 months ago after cataract surgery. I have macular degeneration also and it masked the Fuchs for several years. My vision was always getting worse, even after Lasik surgery twenty years ago, new glasses, taking eye vitamins for macular degeneration, and cataract surgery. I live in South Florida and I am very lucky to have one of the best Fuchs eye surgeons close to me. He recommended DSO (Descemet Stripping Only), followed by Glanatec drops from Japan. I had it done on my right eye on March 29, 2023. Since Fuchs is primarily genetic in origin, I let my family members know of my diagnosis. I found out that my Aunt on my Dad's side was diagnosed with Fuchs 20 years ago. She did not want cornea surgery. She is 97 now and my cousin can't tell how well she sees because she has difficulty with verbal expression due to several strokes.
I see my doctor this week for the 2 week post-surgery follow up. I will have to put Glanatec drops in my eyes 4 times a day for the next two months. The drops are supposed to encourage healthy endothelial cells from the periphery of the Descemet layer of the cornea to migrate to the center and create more healthy endothelial cells. Right now my vision is very blurry. My doctor has been doing this for 8 years with great success. It is much better than any cornea transplant because there is no chance of rejection and no long term steroid use. I am praying and hoping for success. A good support group and source of information is Fuch's Friends on the internet. Just search for Fuch's Friends and you should find it. They use groups.io for communicating, it's a little hard to figure out and use, but not impossible. They also have a list of the best Cornea Specialists for Fuchs. It is extremely important to have a surgeon with a lot of experience with Fuchs surgery. Prayers and hugs to all of you going through the same issues.

Update - I had my surgery. On April 12th I went to my two week post-op appointment. I could read four more lines and my doctor was extremely pleased with the start of endothelial cells migrating along the edges of the surgery. I go back in 7 weeks. In the meantime I continue the glanatech drops from Japan. I'm already seeing more than I was at my post-op appointment last week. I'm extremely happy. Wishing the best to others who have Fuchs' dystrophy.

Hi Denise. I also have Fuchs. I was diagnosed a few years ago at 68 (now 70). My doctors sys I am a candidate for DSO, that seems to be the preferred way to go if one is a candidate. I recently ordered my Glanatec 0.4% from Bio-japan. Was that where you ordered yours? I am nervous ordering from an online pharmacy. I am glad you are having cell migration, that almost seems like magic. My first surgery will probably be this fall on my right eye.

Hi Bruce,
I ordered from the pharmacy that has a box of 5 bottles. The hardest part for me, was paying for the eyedrops. It was complicated. However, the drops arrived as promised.
I am in the Upper Peninsula of Michigan right now. I live in Naples, FL. I am very fortunate to have one of the top surgeons, Dr. Mark Gorovoy as my surgeon. He's been doing DSO surgery for 8 years. Surgery went really well and I plan to have my left eye done when we return to Florida in November.
I'm sure your surgery will go well! Keep up with your eyedrop regimen and you will have a successful outcome! Let me know how you are doing. Best wishes, Denise

Thank you Denise. I received 5 5ml bottles in a box, that sounds like what you received. Thanks for the good thoughts and best of luck with your next surgery.