As a parent, you always want what’s best for your child and you want them to be healthy. While any medical news or diagnosis may come as a shock, oftentimes there are options available to treat or manage the condition. This is true for keratoconus. If you’ve noticed that your teenager is experiencing some issues with his or her vision without any explanation behind it, keratoconus may be a scary, but ultimately welcomed diagnosis.

Since keratoconus is a genetic[1] [2] condition, it may not be a total surprise if other family members are also living with this progressive condition. If your teenager was diagnosed with progressive keratoconus, the condition was hopefully detected early. In this case, there are treatment options available that can help to preserve vision, such as iLink® FDA-approved cross-linking. It’s important to note that the safety and efficacy of cross-linking has not been established in children under 14 years of age.

Below we’re answering some commonly asked questions, sharing tips on how to communicate with your child about their diagnosis, and detailing firsthand accounts from parents who have gone through this process themselves.

Do You Have Questions? We Have the Answers!

You likely want to learn everything you can about your teenager’s recent keratoconus diagnosis. Maybe you have never heard of the condition before and want more information. Don’t worry, we’ve got you covered!

What is keratoconus?

Keratoconus, often referred to as ‘KC’, is an eye condition in which the cornea weakens and thins over time, causing the development of a cone-like bulge and optical irregularity of the cornea. The condition can result in significant visual loss and may lead to corneal transplant in severe cases. The rare condition typically first appears in individuals who are in their late teens or early twenties, and may progress for 10-20 years, and then slow or stabilize. Each eye may be affected differently, and in the early stages of keratoconus, people might experience slight blurring of vision, distortion of vision, and increased sensitivity to light.

What keratoconus disease intervention and vision management options are available?

Disease intervention consists of halting or slowing disease progression, there is only one FDA-approved procedure proven to do so. Vision management focuses on correcting the distorted vision caused by the thinning and bulging of the cornea. End-stage surgery is a last resort option.

  • Vision Management: Eyeglasses or Soft Contact Lenses, Rigid Gas Permeable Contact Lenses, and Intacs
  • Intervention – To halt or slow disease progression: FDA-Approved Corneal Cross-Linking (iLink®)
  • End-Stage Surgery – To replace severely diseased or scarred corneal tissue with healthy tissue from an organ donor: Corneal Transplant Surgery
What is corneal cross-linking?

Cross-linking is a minimally invasive outpatient procedure for the treatment of progressive keratoconus; it has been proven safe and effective in patients ages 14 to 65 years old. The goal of the procedure is to stiffen the cornea to slow or prevent further progression of the condition and preserve your vision. iLink® FDA-approved cross-linking combines the use of prescription eye drops, Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution), Photrexa® (riboflavin 5’-phosphate ophthalmic solution), and ultraviolet A (UVA) light from the KXL® system to create new collagen cross-links and leads to the stiffening of the cornea.

It’s important to note that cross-linking is not intended to eliminate or reduce dependence on refractive correction. Since iLink® is not intended to improve vision, but rather to halt the progression of the condition, many people will still need to wear corrective contact lenses following the procedure. Ideally, once progressive keratoconus is treated with iLink®, it is easier to fit patients for contact lenses and many find their prescription does not change as frequently.[3]

What is iLink®?

iLink® is the only FDA-approved corneal cross-linking procedure and has been approved in the United States since April of 2016. It is a minimally invasive treatment proven to be safe and effective in slowing or halting the progression of keratoconus to preserve vision. Unlike iLink®, unapproved drugs and devices have not been validated and their manufacturing process has not been evaluated. iLink® cross-linking is widely covered by insurance and is the ONLY cross-linking procedure eligible for reimbursement in the U.S. Discuss the risks and benefits with your doctor.

Will insurance cover the procedure?

Insurance coverage for iLink® FDA-approved cross-linking is now widely available. Greater than 95% of the commercially insured population has access to this potentially sight-protecting treatment. Epi-off iLink® with Photrexa drug formulations is the only cross-linking procedure covered by insurance. Many insurance policies have details about the fact that this epi-off procedure is the only FDA-approved treatment for progressive keratoconus that is being covered, while epi-on is not. For additional information on insurance coverage and to view the latest list of insurers that are known to have policies that cover the iLink® cross-linking procedure, visit the Insurance Information page.

What is the recovery from iLink® like and what are the side effects?

There is some discomfort during immediate recovery but usually not during the treatment. Immediately following treatment, a bandage contact lens is placed on the surface of the eye to protect the newly treated area. After the numbing drops wear off, there is some discomfort, often described as a gritty, burning sensation managed with TylenolÒ and artificial tears. If pain is severe, oral narcotic medications may be used. People with keratoconus should always avoid rubbing their eyes, but especially during the first five days after the procedure. During this time, you might notice some sensitivity to light, which can be reduced by wearing sunglasses. Ulcerative keratitis, a potentially serious eye infection, can occur. Your doctor should monitor defects in the outermost corneal layer of the eye for resolution. The most common ocular side effect is haze. For the full list of potential side effects, see Prescribing Info.

What questions should I be asking the eye doctor?

Prepare for your next appointment by creating a list of questions you can ask to help you navigate through your family’s keratoconus journey. Not sure what to ask, considering some of the following questions:

  • How will keratoconus affect my teenager’s vision?
  • Will their keratoconus get worse?
  • What are the available treatment options, and which do you recommend?
  • How can keratoconus be stopped from progressing?
  • Is the procedure that you are recommending FDA approved or investigational?
  • Is there anything that makes keratoconus worse?
  • Is keratoconus genetic? Should I make sure my family members get tested?

You can read the full list of questions here.

Should I get screened for keratoconus? Should I have my other children screened?

People with a parent, sibling, or child who has keratoconus have a 15 to 67 times higher risk of developing corneal ectasia compared to patients with no affected relatives[4] [5]. If your teenager has been diagnosed with keratoconus, there is a possibility that others in your family may also be living with the progressive condition as well. Don’t wait to make an appointment for a comprehensive eye exam.

How to Talk About a Keratoconus Diagnosis with Your Teenager

Keratoconus typically first appears in individuals who are in their late teens or early twenties. However, there have been instances where young children have also been diagnosed. The age of your child will determine how you go about discussing their diagnosis with them. For example, a high school student or young adult may have a better understanding of the condition based on what the physician has explained to them and their own research. On the other hand, a young child who was diagnosed with a vision issue may not really understand what is happening, what might need to change (ex: contacts), or what this will mean for them [6].

Below are some tips to consider when discussing a keratoconus diagnosis with your child.

Educate yourself first

After a doctor tells you about your teenager’s condition, you might feel overwhelmed. The doctor likely shared a lot of information and new terms that can be difficult to process all at once. Take the time to review all of the information provided and do your research. With this information, you will be better able to explain the situation to your teenager and answer any questions that they may have. It may also lead to some follow-up questions that you want the physician to clarify at the next appointment.

Speak with your teenager

Following a diagnosis, talk with your teenager to make sure they understand what is going on and give them the chance to ask any questions they may have after their appointment. While your child might be confused, sharing the benefits of early diagnosis and available treatment options in a way they can understand can help to ease any uncertainty. As a team, you can determine the best plan to preserve their vision in consultation with a physician, whether that is iLink® FDA-approved cross-linking and/or corrective lenses.

Let them know that they are not alone

Being diagnosed with a health condition can be an isolating experience, but it doesn’t have to be. You can help your teenager feel connected and supported by assuring them that you will be there to help every step of this journey. While their friends may not be living with keratoconus, some may also have vision issues and need to wear glasses or contact lenses, or could be dealing with other health issues. You can also help them find a way to talk about their diagnosis and what it means in a way that is easy for their peers to understand.

Connect with Support Groups

Although it may not seem like it, you are a big part of your teenager’s keratoconus journey. This may mean that at times you will also need some support. There are support groups that parents and young adults can join to connect with others who are living with keratoconus, including the National Keratoconus Foundation and the Keratoconus Group. In these groups, people come together to look for information, ask for help, share their personal experiences or those of their loved ones, or find comfort in reading what others are going through. Below are two parents* in the Living with KC community who shared what it was like for their teenagers to be diagnosed with the progressive condition – including one mother who is also living with the condition.

Pamela: As a mother of three boys, one of Pamela’s biggest concerns is their health. When her two oldest boys started complaining of vision problems, she suspected right away what might be causing their issues, as she and her sister had been living with keratoconus for many years. At the time of Pamela’s diagnosis, cross-linking was not an available treatment option so she wore contact lenses for some time before deciding to receive a corneal transplant. Pamela is glad that now there is an FDA-approved treatment to slow or halt the progression of this genetic condition. While her sons’ recoveries varied in term of pain levels and light sensitives, Pamela is incredibly thankful that her boys may not have to go through what she did when it comes to a corneal transplant and she is confident that keratoconus won’t consume their lives or futures.

Mat: In the first grade, Mat’s son Luke began complaining of vision issues, such as blurriness and double vision. To help correct this, Luke was prescribed glasses, but over the next five to six years, his vision continued to decline. After getting a second opinion, Mat felt immense relief to finally receive an accurate diagnosis for his son – he was living with keratoconus and referred to a local ophthalmologist. Without hesitating, he scheduled Luke’s appointments to receive iLink® FDA-approved cross-linking. Although they were anxious at first, everything went smoothly. After the procedure to halt his progressive keratoconus, Luke also began using properly fitting scleral lenses which have helped him see clearly and impacted all aspects of his life. After years of endless questions and no answers related to Luke’s eye health, Mat’s family is comforted to know that Luke had finally received a proper diagnosis and was able to intervene with cross-linking.

*Results may vary

Looking Forward to the Future

Remember you and your child are not alone. There are many people in the keratoconus community going through the same thing as your family. We understand that a keratoconus diagnosis is difficult to process, but thanks to technological advances, there are treatments available to help slow or halt the progression of the disease and preserve vision.

Making sure you are informed with the right information is the first step to finding a physician and treatment path that is right for your teenager. For more information on keratoconus and available treatment options, including iLink® FDA-approved cross-linking, visit our website. Also, don’t forget to follow Living with KC on Facebook, Twitter, and Instagram.

[1] Fecarotta CM, Huang WW. Pediatric genetic disease of the cornea. J Pediatr Genet. 2014;3(4):195–207. doi:10.3233/PGE-14102

[2] Wang Y, Rabinowitz YS, Rotter JI, Yang H. Genetic epidemiological study of keratoconus: evidence for major gene determination. Am J Med Genet. 2000;93(5):403–409

[3] Kreps, E. O., Pesudovs, K., Claerhout, I., & Koppen, C. (2021). Mini-Scleral Lenses Improve Vision-Related Quality of Life in Keratoconus. Cornea, 40(7), 859–864.

[4] Fecarotta CM, Huang WW. Pediatric genetic disease of the cornea. J Pediatr Genet. 2014;3(4):195–207. doi:10.3233/PGE-14102

[5] Wang Y, Rabinowitz YS, Rotter JI, Yang H. Genetic epidemiological study of keratoconus: evidence for major gene determination. Am J Med Genet. 2000;93(5):403–409

[6] Ferdi AC, Nguyen V, Gore DM, Allan BD, Rozema JJ, Watson SL. Keratoconus Natural Progression: A Systematic Review and Meta-analysis of 11 529 Eyes. Ophthalmology. 2019 Jul;126(7):935-945. doi: 10.1016/j.ophtha.2019.02.029. Epub 2019 Mar 8. PMID: 30858022.

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