Growing up I was in love with the night sky. I watched for falling stars. I spoke to the moon (yes, I was that kid). I was obsessed with the show Cosmos (bless you Carl Sagan!) and hosted viewing parties of the reboot! Followed NASA and the Hubble Space Telescope on social media. I have, and continue to, devour science fiction books & movies. In short: I love the stars.

With Fuchs Dystrophy I have slowly, over time, lost my ability to see them.

I have seen the Milky Way in all it's glory, and the idea of never being able to see it again is heartbreaking, I would love some day to see The Perseids meteor shower, or Halley's Comet! Or even the humble constellations in my own back yard. With your help, this surgery will not only improve my life on a practical level, but will, I hope, return to me the stars that I love.

What is Fuchs’ Dystrophy?

Fuchs’ Dystrophy is a disease of the cornea. The cornea is lined with endothelial cells which help maintain the fluid balance of your cornea and prevent the cornea from swelling. With Fuchs’ dystrophy, these cells gradually die and fluids build up in your cornea which then becomes swollen, and the membrane that anchors them to the back of the cornea becomes abnormally thick. This makes focusing difficult, resulting in hazy or blurred vision.

Symptoms

• Blurred or cloudy vision, combined with poor contrast in colors

• Fluctuating eyesight throughout the day or day to day, which is usually worse in the morning or on humid, rainy days

• Halos and/or glares from bright lights, especially at night

• Pain or grittiness from tiny blisters on the surface of your cornea.

My Experience

As someone who suffers from Fuchs’ Dystrophy, I have experienced nearly all of these symptoms. Including cloudy vision that lasts for hours at a time, and dangerously bright halos on street lamps or oncoming headlights while driving at night. Reading has become increasingly difficult for me as well. Particularly on small text or text with poor contrast (which I have found to be nearly everything at this point. Who designs these things!?). I often have to use the flashlight app, or zoom in with my phone camera to read. Even with my glasses.

The most bizarre aspect of Fuchs' is HOW I see text. The best way I have found to describe it is like having a hundred tiny blind spots. With a normal blind spot, your brain easily fills in the missing data based on the context surrounding it. But with so many dead cells creating these tiny gaps in my vision, a single letter of text might be nearly, if not fully, obscured. And without sufficient context to interpret what that letter might be, my brain simply tries everything it can think of, one after the other. This results in text that flickers and shifts. I may see an F one second and an E, or an R or a P the next. A C becomes an O or a Q with the slightest shift of my eye. It is... surreal (and it makes those damn charts at eye exams particularly frustrating!)

Treatment

There is no cure for Fuchs’ Dystrophy. Symptoms can be managed with expensive eye medication. Including eye drops and ointment to reduce swelling. Fuchs is a degenerative disease, and will continue to worsen as I get older. In later stages of the disease, the best option for improving vision is through a corneal transplant.

What it would mean for me

• No more expensive eye meds

Treating the symptoms of Fuchs Dystrophy requires expensive eye medication. Including ointment, and eye drops that you have to take 4 times a day! These meds can cost around $30 a bottle! This surgery should significantly reduce my medical expenses going forward.

• Safer driving at night

Eliminating dangerous light halos, and improving my visual acuity should make driving at night much easier & safer.

• Reading/working easier

My job involves working on the computer (in this case a relatively small laptop) all day. Over time I have also had more and more difficulty reading things like: my phone screen, package labels or instructions, road signs. Obviously, increasing my ability to read smaller text will make my work, as well as day-to-day tasks, so much easier. And with less eye strain it will help reduce side effects, such as headaches.

• Viewing/creating art

As an artist, a curator & a crafter my vision is incredibly important to me. Losing the ability to distinguish fine detail is both distressing and debilitating. Many of the crafts I practice require fine motor skills and the ability to see subtle contrast between colors or textures. Things like: threading a needle, or crocheting with fine yarn or dark colors. As a lover of film, it's also frustrating to so often miss subtle effects or details, or having to pause to read text on the screen.

• Seeing the stars again!

Another tragic effect of Fuchs Dystrophy is slowly, over time, losing my ability to see the stars. Looking up to the sky now I can see just a few of the very brightest stars in the sky, and are rarely able to pick out specific objects or constellations, even when they are pointed out to me (also true of birds in the sky, or distant objects or vistas).

I have seen the Milky Way in all it's glory, and the idea of never being able to see it again is heartbreaking, I would love some day to see The Perseids meteor shower, or Halley's Comet! Or even the humble constellations in my own back yard. This surgery will not only improve my life on a practical level, but will, I hope, return to me the stars that I love.

Corneal Transplant Surgery

DMEK: Descemet's Membrane Endothelial Keratoplasty

DMEK involves replacing the outer layer of the cornea with a healthy outer layer of a donor cornea. The damaged corneal layer is removed through a small incision. Then the new tissue is put in place. The donor tissue is held in position with an air bubble placed inside the eye. The tissue self-adheres in a short period and the air is adsorbed into the surrounding tissues. Much of the cornea is left untouched. This lowers the risk of having the new cornea cells being rejected after surgery.

Recovery timeline

The insertion of a gas bubble requires the patient to lie on their back for the first few days. Lying on your back holds the gas bubble in place and keeps the new cornea in position while the new cells start to function. Eyedrops are required to help the eye heal and prevent the body from rejecting the donor tissue. Vision will be very blurry at first. This is because of the gas bubble as well as slight swelling of the eye. As the gas bubble dissipates over seven to ten days, vision continues to improve. The majority of the healing that needs to occur takes place within the first month after treatment. Vision will continue to improve over time, with many patients improving their vision even one to two years after surgery.

Post-operative needs

For the first few days after surgery, I will need to remain on my back for a minimum of 45mins of every hour. This length of time slowly tapers off over the next few days. Other activity restrictions will continue through the first week after surgery. This includes any strenuous activity such as running or gardening. I will also not be allowed to lift anything over 10lbs. I will need to wear an eye patch to protect the eye from scratches or abrasions, and to limit the risk of infection. Driving should also be limited until my vision improves. I should be able to go back to work & resume my normal routine in about 1 to 2 weeks after surgery.

With my movement being restricted, I will need assistance with meal preparation and/or delivery for the first few days. I will also need help with transportation to and from my many follow-up appointments, as I will not be able to drive. I will not be able to work for at least a week while I recover from each surgery (one per eye!), and cannot afford to take much time off, so any additional funds to cover my lost income & help pay my bills will also be needed.

Costs

• Deductible - $4,400

• Co-insurance - $2,000

• Missed work hours:

• Additional funds will go toward food & transportation