Updated: Nov 11, 2021
What is Keratoconus?
Keratoconus is a degenerative condition of the eye in which the normally round, dome-shaped cornea becomes progressively thinner causing a cone-like bulge to develop in the area where the cornea is thinnest - usually in the center.
Although there is no known cause of Keratoconus, so far, it's been identified as a heredity eye disease.
Thanks to new technology, Keratoconus is known to occur in about 1 out of every 500 people (just a couple of years ago it was 1 out of every 2000 people) it's linked to allergies and eye rubbing. And it usually occurs as early as 18 - 20 years of age (primarily in African Americans, Latinos, Asians, and even individuals diagnosed with down's syndrome)
In worse-case scenarios, the eye could progress to advanced Keratoconus. This usually occurs from scarring. A scarred cornea causes worsening vision leading to potential legal blindness. In later stages, a potential KC patient can expect migraines, eye strain, double and blurred vision as well as dry eye. Should one have difficulty driving during the day/night, working, attending school, or even seeing themselves in the mirror - they should locate and schedule an appointment with a Cornea Specialist immediately.
If prolonged and untreated, this experience may require Cornea Transplantation surgery.
Keratoconus Personal Experience
I was diagnosed with Keratoconus in 2009. My vision was 20/400. 2011 was my first Cornea Transplant and 2017 was my second procedure. To paint a clearer picture, 2018 was the first year since 2011 that I worked a full year without needing any type of medical procedure or time off of work for personal and medical reasons.
One of the major hurdles is discovering Corneal Transplantation is not a permanent solution that comes with major responsibility, upkeep of the eye, ongoing care.
After 10 years living with Keratoconus – here’s what I’ve learned:
If a surgeon suggests preparing for a future procedure or your vision changes often, plan for a lower deductible medical plan.
Never assume your employment & benefits are secured. Unfortunately, there’s no such thing as job security. If you have coverage, take full advantage ASAP.
Maintain good health. You’ll need to save most of your money to create an uncontrollable illness.
Even if your boss says they “understand” your condition - do not expect them to accommodate your needs. Protect yourself. Speak with your corneal surgeon and if it's available find out your options through FMLA.
Invest in preventative care and natural products. Studies show copper, zinc, and strengthen corneal collagen fibers.
Depending on what type of health coverage you have, always double-check Good RX for a discount on Prednisolone Steroid Eye Drops. Trust me, this is not a bottle you'll want to misplace or skip out on. But more importantly, pay the full price for the rest of your life. Plus the pain in the eye without steroid drops is indescribable!
Before I switched my insurance plan I would pay $10 a bottle, once a month. Once I started living a healthier lifestyle I needed fewer surgeries and prescription medications. I saved money switching plans but paid over triple the cost for eye drops. The cost of insurance can be beneficial but you'll learn that at times you're paying more out of pocket just for having it.
In the past 10 years, insurance companies started passing 25-80% of the cost of drugs onto patients. But with Good RX it cuts the cost in half or less.
GoodRx gathers current prices and discounts to help find the lowest-cost pharmacy for prescriptions.
GoodRx is 100% free. No personal information is required.
LIVE well so you don’t have to constantly get better.
Fear & procrastination is expensive.
Max out your HSA (Health Savings Account) The money you contribute to your HSA is exempt from all federal taxes as long as it’s spent on qualified medical, dental, and vision expenses.
The bonus with HSA is that YOU get to decide how the money in your HSA is invested. (You do not have to use it or lose it like FSA) With Keratoconus being so unpredictable with no cure, this investment will come in handy for future procedures & life-changing events.
As a patient, never feel obligated to over-explain your long-term life decisions to short-term inexperienced people.
Protect your eyes with blue light protection, high definition, polarized sunglasses. Ensure the frame is solid and consider glasses without pad arms and nose pads under the bridge. Polarized frames tend to last longer and provide the most comfort. Wear them often, even when you think you don't need them. This means not just protection from the sun but light - period. As well as dust and other small objects. The donated cornea tissue is very sensitive and sometimes you won't know what causes the stabbing pain, sutures breaking off of the tissue, potential rejection. In other words, it's better to be safe than sorry.
If you wear glasses, be mindful of how often you may need to change your lens prescription; your vision can change within weeks (most vision plans will not cover more than 1-2 exams per year or new prescriptions in full)
Get your children’s vision checked early. And keep them from rubbing their eyes excessively.
Do your own research before deciding on the best procedure for you. Although a professional may say you only have one option, you must guarantee it for yourself and act quickly. A cornea transplant is a temporary fix with uncertain outcomes and a lengthy recovery. Check out Dr. Boxer Wachler's TED Talk for more information.
Dr. Wachler is a highly sought-after surgeon. He's known as the celebrity "surgeon's surgeon." He pioneered a surgery (Holcomb C3-R Crosslinking) that finally corrected his patient's eyesight long-term.
The more income you have the better access to top professionals and information. Unfortunately, it's common for patients to choose a doctor based on location and insurance coverage instead of research and beliefs. This leads to my next point...
Dig your well before you’re thirsty; never rely on one source of income. This is an ongoing disease. Life tends to throw curveballs and costly surprises. Preparation is key.
Lastly, pursue your passion and see the world. Obviously, this is just my personal choice. We just never know the last time we'll have the opportunity to see it. As a recipient, I always go about my day as if I'm living through my donor's eyes. I wonder which places they always wanted to visit and every missed opportunity to do it. It's truly a gift and honor to live through others.
Remember, appreciation is a choice and to have vision is a gift. Let us not forget it. Schedule regular eye exams and never be afraid to get a second or third opinion. Living with Keratoconus has its challenges but there are treatments for early stages that will help save a lot of time, worry, and cash. Stay encouraged, read as many real Keratoconus stories as needed, and connect with small groups if it helps. It's always reassuring knowing you're not alone.