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Anyone here have Fuch's Dystrophy?

Eye Conditions | Last Active: Oct 23 12:11pm | Replies (84)

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@vickied

Thank you for sharing. I have Fuchs and Macular. I also have Sjogren. Last visit with my ophthalmologist was recent and he gave me the diagnosis of macular degeneration. He said see you next year and ordered a new prescription. I lost vision in the left eye, but was told the macular is mild. He is supposed to be a specialist in cornea, but I am wondering if I should see a specialist for the retina. Any advice?

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Replies to "Thank you for sharing. I have Fuchs and Macular. I also have Sjogren. Last visit with..."

Dear Vickied,
I started out with a diagnosis of Dry Macular Degeneration. I was monitoring my vision and making many appointments with my Retina Specialist because my vision was deteriorating. I had been told to call for an appointment any time it appeared that my vision was getting worse. The concern was that it could be turning into wet macular degeneration and I would need shots in the eye to save my vision.
When my Retina Specialist diagnosed my problem as Fuchs Dystrophy, he discharged me with instructions to call for an appointment if I saw a big "S" on the Amsler Grid.
That was my experience with my Retina Specialist. I don't know if you should see a Retina Specialist. However, it might be nice to establish a relationship with a Retina Specialist.
I would definitely see a Cornea Specialist for my Fuchs. There is a support group called "Fuchs Friends" on the Internet. They have a database of the best Cornea Specialists from all over the world. Here is their website: https://www.cornealdystrophyfoundation.org/support-groups.
I wish you all the best!
Denise

Yes, (age related) macular degeneration or wet macular degeneration are matters to be dealt with by retinal specialists.

Corneal specialists specialize in corneas (Fuchs Dystrophy being a corneal condition)..

Macular degeneration comes in various types and degrees of severity. (One is "dry" the worst level being "geographic" and which can advance to "wet" macular degeneration about 10% of the time.)

Vision is precious and should be dealt with with the utmost care. For the most part, damage from either of the retinal conditions you mentioned is permanent although specialized treatments can ameliorate the progression and sometimes even improve acuity.. This applies especially to " wet" macular degeneration which involves the growth of tiny abnormal capillaries behind the retina which leak, causing the death of retinal cells.

Most fortunately, there is now an effective treatment involving injections into the leaking retina (first sign, fluid behind the retina) which though incurable to date, can slow the progression to vision loss. It is "popular' to claim it doesn't cause blindness but that's just a falsely reassuring claim, because although it destroys central vision it leaves some peripheral vision. That much limited peripheral vision is not adequate to read, recognize faces, or to drive, though.

It must be taken very seriously and followed by the most qualified retinal specialists to maximize the quality and length of ones visual acuity.

(Speaking as someone who saw specialists in both areas at the Wilm's Eye Clinic at Johns Hopkins, though, my corneal problem was trivial.)

If I had gone to an ophthalmologist (then to a retinologist) as soon as I was symptomatic (usually blurriness and/or damage to the central vision in one or both eyes) I might have prevented permanent damage to the affected eye. (That would have been through prompt injections in it. )

That damage involves spots, or dark areas in the affected eye(s), also waviness so that when looking at text, it appears to go up and down. I thought my new glasses had been mis-ground. If I hadn't delayed a careful eye examination, I might have done sooner to the right specialist and diagnosis, before the visual distortion was permanent - so far, only in one eye. At least, the damage is so far, not that bad thanks to the injections.

Rarely (I hope I am one) it doesn't spread to the "fellow eye".

PS The eye injections aren't nearly as ghastly as one might expect. The surface is first numbed and the injection is very fast.