A keratoconus diagnosis can trigger a range of emotions for you and your family, especially if you’re unfamiliar with the condition. You may feel confused, frustrated, and scared or unsure of the future. Aside from any initial feelings, a diagnosis might leave you with more questions than answers, turning to the internet, your family, or physicians for any information on keratoconus and available FDA-approved treatment options.

Not only can it be overwhelming to learn that you are living with a progressive condition, but the number of available options to manage the condition, such as specialty contact lenses or FDA-approved corneal cross-linking, can also have you wondering what option is best for you. You may also want to hear from others who have had a similar diagnosis and experience.

Here at “Living with KC”, we don’t shy away from sharing personal experiences or advice that can be beneficial. Below are some pieces of advice that you may consider, to help you throughout your keratoconus journey.

Do Your Research

Arming yourself with as much information as possible can be useful when it comes to determining your proper treatment path. There are several FDA-approved options available to manage or treat keratoconus – from glasses and contacts to help manage, to other options like cross-linking and corneal transplant for treatment. Often, the appropriate treatment option may depend on the extent of progression of your condition. By doing some research, you can learn more about keratoconus, what treatment options are available, and even read reviews on cross-linking experts in your area. There is a lot of information out there, and it can be confusing and overwhelming browsing the internet looking for answers. Below are some resources to help.

Perhaps you have never worn prescription lenses before and are unsure of what kind to buy or the best way to put them in your eyes. Resources such as the American Academy of Ophthalmology and the Centers for Disease Control and Prevention can be helpful when it comes to wearing contacts and putting them in for the first time. Even articles from general-interest publications, such as Reader’s Digest, can be helpful when it comes to buying a pair of glasses that are right for you.

Living with Keratoconus Community Feedback

        • Don’t give in to the depressive urge, [you] can still live a normal life.
        • Get used to contacts lens discomfort and fatigued eyes.
        • Don’t rub your eyes, there are great options for optimal sight.

Find the Right Doctor

Finding an eye doctor might be hard, but the right one can make all the difference when it comes to your keratoconus journey. Your primary care physician or regular eye care professional may be the one to notice changes in your vision or even suspect that you have keratoconus. However, you may be referred to a keratoconus expert. If you aren’t comfortable with a suggested treatment path, you should seek out a second or third opinion before making a final decision.

Once you find a doctor that is right for you, ask questions and make sure they are answered thoroughly. This is the time to better understand your condition and the available treatment options. Every patient is different and a one-on-one discussion with your doctor can provide important insight into your condition and treatment options specific to you that you won’t find on the internet. In some instances, it can be helpful to come prepared with a list of questions that you want answered, such as “How will keratoconus affect my vision?” and “What treatment options are covered by insurance?”.

Living with Keratoconus Community Feedback

        • Patience and a good doctor who deals with KC on a regular basis.
        • Make sure you see a doctor that specializes in keratoconus.
        • Visit a trustworthy doctor.
        • Don’t panic. Find a doctor you trust and follow his/her instructions. Nowadays, there are treatments that can give you great results.

If you’re looking for a physician in your area who is performing FDA-approved cross-linking, visit our website.

Connect with the Keratoconus Community

Your family and friends may be supportive of your journey, but it could be difficult for them to truly understand what you’re going through. What you may not realize is that there are others who are going through, or have gone through, similar experiences. Finding a keratoconus community can help you connect with others who are living with keratoconus and hear their personal stories. This may be helpful when it comes to finding a doctor, learning what treatment options have worked for others (and which ones have not), and how others may be handling everyday struggles, such as cleaning their contacts or driving at night.

Living with Keratoconus Community Feedback

        • Never fear. Find more KC friends. Talk to them. Share knowledge. Might help emotionally and mentally.
        • Get in contact with the National Keratoconus Foundation. Knowing that others are living with the condition and overcoming helps.

Don’t Give Up!

A keratoconus diagnosis might seem overwhelming at first, but there are plenty of available resources and people to help you during your journey. You can never have too much information on keratoconus as you go through your journey, from diagnosis to treatment. Visit our website to learn more about the condition and available treatment options, such as FDA-approved cross-linking, and follow us on Twitter, Facebook, and Instagram to connect with others who are living with keratoconus.

Do you have any other inspiring thoughts to share with others living with keratoconus or any useful advice that you would like to pass along? Tag Living with KC on social media and let us know!

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