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Tips for Coping With a Keratoconus Diagnosis

Tags: Understanding a Diagnosis

If you or a loved one has recently been diagnosed with keratoconus, you may be feeling all sorts of emotions – confusion, worry, fear, anxiety, or maybe all of the above. You might also have thoughts, questions, and concerns running through your head about the diagnosis and available treatment options. Regardless of what emotions you’re experiencing, it’s important to understand that they are all valid! 

At Living with KC, we want to offer some advice and provide strategies to help you manage your emotions. These include how to find a support system, how to find a treatment option that is right for you, or how you can support yourself through this journey. Continue reading to learn more.

Find a Treatment Option Right for You

Being diagnosed with keratoconus can be overwhelming and raise many questions. While your emotions may be high, it’s important to retain all of the information that your doctor is telling you. One way you can do so is by taking notes during your appointments or by asking your doctor for a summary to get a better understanding of what you’ve discussed. You should also consider bringing a friend or family member with you to listen and learn about your diagnosis. But you shouldn’t stop there! Consider doing some research at home to gain additional knowledge and insight. 

Keratoconus is a progressive eye condition where the cornea weakens over time causing the development of a cone-like bulge and optical irregularity. While it can result in significant vision loss, there are various treatments available to consider. You should understand the goals of each of these treatment options and how they vary. For instance, some treatments address correcting distorted vision, or vision rehabilitation, caused by the thinning and bulging of the cornea but do not halt the progression of the disease. Below are some treatment options your doctor will likely mention as you navigate your keratoconus journey. Keep in mind that a combination of the below treatments may also be an option.

Vision Rehabilitation – To Address Vision Needs

  • Eyeglasses or Soft Contact Lenses: Mild and early cases of keratoconus can be managed with glasses or traditional non-specialty soft contact lenses if the degree of corneal distortion is not too severe. Moderate cases can sometimes be treated with specialty soft lenses, designed specifically for keratoconus. These lenses typically have a thick central optic zone to mask the corneal irregularity and a thin periphery for comfort. However, it is important to note that the use of contact lenses does not stop one’s keratoconus from progressing.
  • Rigid Gas Permeable (RGP) Contact Lenses: RGP contact lenses are rigid lenses made of durable plastic that can transmit oxygen. Scleral contact lenses are also gas permeable, but are larger in diameter and designed to cover the entire cornea plus a portion of the white of the eye. Hybrid contacts are RGPs surrounded by a soft lens lining or skirt.
  • Intacs: Intacs is the trademark name for micro-thin prescription corneal implants designed for the reduction or elimination of myopia and astigmatism in patients with keratoconus. Intacs are thin plastic, semi-circular rings, which are surgically inserted under the surface of the cornea. When inserted into the keratoconic cornea, they flatten the cornea, changing its shape. 

Intervention – To Halt or Slow Disease Progression

  • Corneal Cross-Linking: Cross-linking is a minimally invasive outpatient procedure for the treatment of progressive keratoconus. It is the only procedure proven to stiffen the cornea to slow or prevent further progression of the condition and preserve your vision. 

End-Stage Surgery

  • Corneal Transplant Surgery: When a person’s keratoconus has progressed so far that the cornea becomes dangerously thin or when sufficient vision can no longer be achieved by contact lenses, a corneal transplant may be the only option. During the surgery, the part of the cornea affected by keratoconus is removed and replaced with a donor cornea. While the surgical transplantation of a new cornea may resolve the basic problem of corneal surface irregularity, eyeglasses or contact lenses are usually needed after the surgery for vision correction.

Having a treatment plan in place can give you peace of mind knowing that you are taking the right steps to preserve your vision as much as possible. So, make sure to get organized by setting up appointments, understanding your options, and finding the right doctor! Also, before your next appointment, jot down some questions you may have for your physician. Sometimes getting answers to your questions can provide some much-needed relief.

Find a Reliable Support System

After learning more about your keratoconus diagnosis and available treatment options, it’s important that you (and your family) find ways to release and manage your emotions in a healthy way. Whether you want to turn to a family member, friend, coworker, or even a therapist, finding a core emotional support system that helps you deal with the diagnosis and your emotions is important throughout your journey. 

Although your support system may not fully understand what you are going through, it could be beneficial for you to talk about your feelings with them. Don’t want to just sit down and talk about your diagnosis? Consider taking a walk with a friend to discuss your condition and what it means for you. They could surprise you and may be willing to do some research or assist you in another way, such as by driving you to and from your appointments. If you feel comfortable, you can also start by asking a friend or family member to come to a doctor’s appointment with you to learn more about your condition and what your next steps are. You may be more relaxed and feel reassured having a familiar face with you at your appointment. 

Having a support system can help you feel more at ease and confident. On the other hand, a lack of social support can lead to isolation and loneliness – so don’t be afraid to get your friends involved. They’ll likely want to support you in any way that they can!

Join a Keratoconus Community 

While it’s important to develop a personal support system when dealing with a diagnosis, it’s also just as beneficial to join a support group to connect with others who are going through a similar experience. There are online groups you can join – such as the Keratoconus Group on Facebook – where many people are asking or answering questions and expressing concern within a community that understands and can relate!

It is vital to your well-being to know you are not alone. In these support groups, you may find answers, tips, advice, doctor recommendations, success stories, and more. You can also gain some insight into the treatment options that are available and hear some firsthand experiences. While you may be reading online about treatments others have tried, make sure you are connecting with your physician to discuss what is right for you. 

So What Else Can I Do? 

Once the initial shock of a keratoconus diagnosis has worn off, you might be wondering what to do next, who to turn to, or simply how to cope. Below is a list of things you can do to manage your emotions and develop a strong support system to help you get through this uncertain time. 

  • Talk About Your Feelings or Concerns: Some days you might just want to get some things off your chest. Ask your friends if it’s ok that you share your feelings with them, whether that is over the phone, through text message, video chat or in person. 
  • Catch Up with a Friend: A keratoconus diagnosis doesn’t mean you stop living your life, so continue to be social! Ask a friend or a family member to grab food or coffee, go for a walk, or do one of your favorite activities. Catching up and having a good time can sometimes be just what you need!
  • Volunteer: Many people have found that helping others gives a sense of purpose. It also increases your social interaction, which helps you build a support system based on common interests and goals. 
  • Exercise: Working out will help you both mentally and physically. It also will give you a chance to get out of the house and challenge yourself. So, join a gym or fitness center or go for a long walk/run. 
  • Meditate: By meditating, you can add some balance and relaxation to your routine if you are feeling overwhelmed. Breathing exercises and meditation can help you calm down and get some clarity, while also allowing you to focus on the present moment rather than worrying about the future.

A Sense of Relief

Take a deep breath and know that your feelings about your keratoconus diagnosis are normal. Now that you have learned some ways to cope with your diagnosis, we hope you are feeling better about your condition and what lies ahead. Remember, a proper treatment path and a solid support system can go a long way. Don’t hesitate to come back to this blog if you are still feeling a little lost and struggling with your emotions.

To find a doctor near you to get screened for keratoconus, use our locator tool.

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