Did you know that an early diagnosis is critical for people who are living with keratoconus? If left untreated, a person’s keratoconus may continue to progress resulting in vision loss. If the condition is diagnosed early, people may be able to treat their progressive keratoconus with iLink® FDA-approved corneal cross-linking to slow or halt the progression. However, a corneal transplant may be the only option when the cornea becomes dangerously thin or when sufficient vision can no longer be achieved by contact lenses due to corneal steepening, scarring, or lens intolerance.
If you’re considering a corneal transplant to treat your keratoconus, or wondering about organ donation in general, you may be interested in learning more. Below we’ve compiled some information for you, including an overview of the connection between keratoconus and corneal donations, organ donations, organizations you should be aware of, and how to become a donor. Keep reading to learn more.
Keratoconus and Corneal Transplants
For some people who are living with keratoconus, a corneal transplant may be the only available treatment option, depending on how far the condition has progressed. If you or a loved one are planning to undergo a corneal transplant, your ophthalmologist will tell you everything you need to know, such as why you need the surgery, how it can help, and what to expect before, during, and after the procedure. If you’re looking for additional information, we’re providing a brief overview of the surgery and highlighting two members of the Living with KC community who received corneal transplants below.
About Corneal Transplants
Corneal transplant surgery is typically performed as an outpatient procedure with either general or local anesthesia. During the surgery, the part of the cornea that is affected by keratoconus is removed and replaced with a donor cornea. While the surgical transplantation of a new cornea will resolve the basic problem of corneal surface irregularity, eyeglasses or contact lenses are usually needed after the surgery for vision correction.
What to Expect Following a Corneal Transplant
As with any surgery, you should be aware of potential complications. After a corneal transplant, your body may reject the new organ. Organ rejection is when the body’s immune system identifies the transplanted tissue as something that shouldn’t be there and attempts to get rid of it. Warning signs that your body may be rejecting your new cornea include eye pain, light sensitivity, redness of the eye, and cloudy or hazy vision. Following the surgery, it’s likely that your physician will prescribe medications, such as eye drops and oral medications, to help control infection, swelling, pain, and to prevent cornea rejections. However, tell your ophthalmologist right away if you experience any of these symptoms. It’s also important to avoid any potential injuries and to take it easy after a transplant, by slowly returning to normal activities, including exercise and playing sports to avoid being bumped or tackled. To learn more, the American Academy of Ophthalmology provides a great overview of what to expect during a corneal transplant.
If you’re considering a corneal transplant, you’re not alone! In addition to Living with KC, there are several keratoconus communities that we encourage you to check out, including the National Keratoconus Foundation and the Keratoconus Group. These groups are great places to connect with others and learn more about their experiences, as they may be similar to your own. In the Living with Keratoconus community, people who received corneal transplants have shared their stories. Keep reading to learn more about Pamela and Steven’s experiences with keratoconus and corneal transplants.
Pamela’s Story: After decades of wearing contact lenses to manage her keratoconus and “watchful waiting”, Pamela decided to undergo a corneal transplant – the only long-term treatment option available at the time of her diagnosis. Despite a difficult recovery, the transplant allowed Pamela to see clearly again without contact lenses and provided her with much-needed relief. As a mother of three boys, Pamela’s biggest concern is their health. When two of her sons started complaining of vision problems, she suspected right away that it was keratoconus since it can be hereditary. After they were diagnosed with progressive keratoconus, Pamela was devastated and nervous that her sons’ only option may be a corneal transplant, but she was thankful that another treatment option – iLink® FDA-approved cross-linking – was available for them.
Steven’s Story: Steven was diagnosed with keratoconus over 25 years ago. He was able to manage his condition and improve his vision with Rigid Gas Permeable (RGP) lenses for a few years, as his keratoconus was too severe for soft, traditional non-specialty lenses. However, his condition progressed so badly in one eye that he needed a corneal transplant to preserve his vision. While it was hard to digest, Steven knew it was necessary to receive the surgery. After he recovered, Steven found that piggybacking RGPs over soft lenses worked well in his non-transplanted eye, while a soft lens on his treated eye provided near 20/20 vision. Now, with the help of specialty contact lenses and a corneal transplant, Steven is back to doing what he loves, which includes playing football.
Becoming Informed About Organ Donation
Now that you’ve learned a little bit more about corneal transplants as a potential treatment option for keratoconus, it’s time to gain an understanding of organ donation as a whole. For example, did you know that although 95% of Americans are in favor of being an organ donor, only 58% are registered? There have been great advancements in medical technology, but the demand for organ, eye, and tissue donation still vastly exceeds the number of donors.
People of all ages and medical histories can choose to be an organ donor. However, a person’s medical condition at the time of death will ultimately determine what organs/tissues can be donated. There are currently 110,000 people waiting for a lifesaving transplant, and another person is added to that list every 10 minutes.
It may seem unbelievable, but one organ, eye, and tissue donor can save and improve more than 75 lives. Specifically, if one person donates their cornea, they could restore sight to two people.
Unlike other organ or tissue donations, almost anyone can be a cornea donor – your age, eye color, eyesight, and blood type do not matter. Only those who suffer from infections or a few highly communicable diseases, such as HIV or hepatitis, cannot be cornea donors.
Watch the video below to learn more about organ donation.
Video from the Health Resources and Services Administration (U.S. Department of Health and Human Services) explaining organ donation and transplantation.
The Organ Donation Community
There are various organizations and communities that help to educate people on organ donation. They also promote awareness and encourage donor registration. These organizations can be government-run or non-profit and can focus on organ donation in general, or specifically on cornea donation.
Donate Life America is a nonprofit organization with the goal of increasing the number of donated organs, eyes, and tissues to save and heal lives through transplantation. The organization also hopes to assist in developing a culture where donation is embraced as a fundamental human responsibility. Specifically, Donate Life America recognizes April as Donate Life Month. Each April, National Donate Life Month encourages Americans to register as organ, eye, and tissue donors while also honoring those that have saved lives through the gift of donation.
Another available resource is Organdonor.gov, which is managed by the Health Resources & Services Administration. This website provides information from the U.S. Government on organ donation and transplantation. The goal of this awareness effort is to educate the public and encourage more people to register as organ, eye, and tissue donors. Organdonor.gov also tries to clear up any misconceptions or myths about organ donation. These misconceptions – such as ‘I’m too old to be a donor’ or ‘I have a medical condition, so I can’t be a donor’ – can often discourage people from registering to be a donor.
Lastly, eye banks help to restore sight by facilitating cornea donations and providing ocular tissue for transplant, research, and education. On average, U.S. eye banks provide tissue for over 85,000 sight-restoring corneal transplants each year. The Eye Bank Association of America’s vision is the restoration of sight worldwide through advancing donation, transplantation, and research in the US and around the world.
How to Become an Organ Donor
Registering to become an organ donor is a quick and easy process. There are three simple steps to becoming an organ donor:
- Make the Decision: Registering as an organ donor is a personal decision. It is up to you whether or not you would like to register to become a donor. If you’re unsure or still have questions about registering, here are some FAQs from gov.
- Register: You can register to become an organ donor online at Donate Life America, organdonor.gov/register, or in-person at your local motor vehicle department. Registering online takes just a few minutes. All that is required is your identification information, a driver’s license, or a photo ID.
- Share with Friends and Family: Let your family and friends know that you have registered to become an organ donor, so they can be aware of and support your decision.
The results described on this site are based on data collected regarding short- and intermediate-term efficacy of treatment. Individual results are not guaranteed and may vary.