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A standard of care for AK is yet to come, leading to varied approaches by doctors. Treatment involves off-label medications like eye drops, injections or oral drugs. In 2024 the European Medical Agency (EMA) has approved Akantior (PHMB, Polyhexanides 0,08%), the first official therapy for this condition available in Europe.

Therapeutical corneal transplantation may be necessary in severe cases to remove the parasite from the eye before the infection is getting deeper or due to corneal melting. Trust your doctor’s expertise and seek second opinions if needed. It is scary but common that you lose vision during AK-treatment. First aim is to eliminate the amoeba and only after this your doctor can focus on your vision. The whole process needs a lot of patience, with outcomes varying for each patient. Some eyes regain vision with medical treatment only, others need a corneal transplantation or further surgeries.

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The duration of AK infection varies based on severity, timing of diagnosis, and patient’s health. Treatment usually lasts 6 months to 1 year, but misdiagnoses, relapses or complications creating treatment challenges can prolong it.

Depending on your individual situation, restoring vision after the infection can take from months to years.

Avoid contaminants & Space drops: Make sure your hands are clean before using eye drops. Additionally, refrain from touching with the dropper tip your eyes or any surfaces. To prevent dilution and enhance treatment effectiveness, wait for 5-10 minutes between applying different drops.

Storing Drops Properly & Travelling: Keeping drops cold can alleviate the burning sensation. Consider using cool packs, an insulated medication travel bag like insulin case, or insulated thermos with ice cubes to keep the drops cool while travelling. However, it is crucial to check the bottle instructions beforehand as refrigeration may not be suitable for all types of drops.

Preservative-Free Eye Drops: Opt for preservative-free eye drops to alleviate any eye discomfort, especially for lubricants.

Use of Vaseline: Applying Vaseline around your eyes can shield your skin from irritants and constant tearing.

Following Drop Schedule & Monitoring Drop Usage: It’s essential to follow your doctor’s advice and not to miss or stop any prescribed drops, even though it may be difficult. Maintain a record of your drops using a specific app or checklist. Setting alarms on your phone with distinct tunes for each medication can prove to be highly beneficial.

Gradual Reduction of Eye Drops: It is recommended to taper off drops gradually instead of abruptly stopping them, especially for cyst-related treatments, with some doctors advising a minimum continuation of six months to one year.

With AK you are most likely experiencing horrific pain. Seeking assistance of a pain specialist is crucial and does not indicate weakness. Proper pain control allows your body to rest and getting through the challenges ahead. Standard pain killers may not be effective. Advocate for an immediate referral to a pain specialist for appropriate pain relief medication.

Trigeminal Neuralgia: To address trigeminal nerve pain caused by the infection, consider asking for nerve modulators like Pregabalin or Carbamazepine. Read more

Gel Pack: Ease pain by using a cold or warm gel pack, adjusting based on your daily needs. Alternatively, a compress heated in boiling water and then cooled could also help alleviate discomfort.

Head Position: Sleeping with elevated head can reduce some pain.

Artificial Tears: preservative free lubricants can help soothe the eye.

Practicing mindfulness and relaxation techniques: like meditation, deep-breathing exercises, can help manage emotional and psychological aspects of chronic pain, reducing pain perception.

Light not only increases your pain but also drains your energy.

Dark Room & Dim the Lights: Create a dark room at home for relaxation by using blackout curtains or black plastic bags on windows.

Keep lights dim throughout the house to reduce eye strain, including covering light sources like that in the fridge.

During these days and weeks in darkness audiobooks, music or meditation may help to change focus.

Additionally, outside or even indoors:

A hat with a wide rim blocks the light.

Use sunglasses of the type that go over your glasses.

If needed an eye patch should be placed onto your glasses rather than directly on your eye, since your eye needs air to avoid additional infection. They are referred to as Eye Patches for Glasses.

Consider taking evening strolls or walking the dog later in the day.

Adjusting Screen Time: Limit your exposure to screens and use blue light filters or night mode settings to reduce the strain on your eyes. Consider taking frequent breaks using the 20-20-20 rule: every 20 minutes, look at something 20 feet away for at least 20 seconds.

Feeling Tired: It is completely normal to feel tired when your body is combatting an infection that impacts not only your eye but also your overall well-being.

Rest as much as possible: Elevating your head while resting can alleviate pressure and discomfort and ensure a dark environment.

Protect Your Pillow: During periods of excessive tearing or eye sensitivity, cover your pillow or sofa with a fresh towel that can be changed daily for hygiene.

Adequate sleep is crucial for promoting recovery.

Mindfulness and Relaxation: Engaging in practices such as meditation, deep breathing exercises, and yoga can effectively reduce stress and anxiety levels. Find what works best for you and incorporate it into your daily schedule. Remember, prioritizing your mental well-being is just as crucial as taking care of your physical health.

Listen to your Body: Your body is fighting a serious illness and requires all its energy to heal; make rest a priority and avoid pushing yourself.

Be Kind to Yourself & Celebrate Small Victories: Practice self-compassion, avoid self-criticism, acknowledge small milestones in your recovery journey and celebrate progress with kindness and patience.

Every Story is Unique, Stay Positive & Connected: There will be ups and downs along the way. Refrain from comparing yourself to others or expecting the worst. Rather than anticipating negative outcomes or thinking of what has gone wrong, keep a positive outlook and improve your situation by getting informed and advocating for the best medical support. Take each day, or even each hour, as it comes. Surround yourself with friends and family who offer emotional support and lift your mood.

Eye Cleaning: Prior to cleansing your eyes, seek advice from your doctor on maintaining proper eye hygiene. It is crucial to have suitable wipes for this task. You can softly cleanse around the eye with a cotton wipe soaked in saline solution or cooled boiled water. Another option is to use physiological serum for cleaning.

Make-Up: It is advised to refrain from using eye makeup until you have approval from your doctor. After getting the go-ahead, ensure that all makeup tools and products are clean and hypoallergenic. Replace all your make up products, which you have used before AK diagnosis, to avoid any risk of reinfection.

Avoid water on your eyes: Until your doctor confirms that the surface of your eye (epithelium) is completely healed and stable you have to protect your eye from water.

Use goggles while showering, washing your hair, or bathing your children.

Avoiding soap and shampoo: Be cautious when using soap and shampoo, as these can cause irritation in your eyes. Opt for gentle, tear-free products and always tilt your head back to prevent any suds from running into your eyes.

Post-shower care: After showering, delicately pat your face dry with a clean, soft towel. Refrain from rubbing your eyes and always use a separate towel for your face to uphold hygiene.

Swimming: While your eye is in the process of healing, it is best to avoid swimming until fully recovered. Once healed, we recommend using goggles for added protection.

Living with AK brings about significant physical and mental hurdles. Coping with excruciating pain, light sensitivity, sleep deprivation, feelings of isolation, uncertainty about the future, as well as fatigue can impact mental health, leading to emotions like grief, depression, helplessness, frustration, and solitude. Many AK warriors are confined to a dark room, feeling they will never make it out of the disease.

Moreover, it is crucial to take into account medical appointments, procedures, intensive treatments, feeling overlooked or misunderstood, the fear of recurrence, water activities and wearing contact lenses, as these factors may trigger traumatic memories. This could elicit emotions such as anxiety and panic attacks known as medical PTSD.

To overcome these challenges, we recommend seeking professional psychological support early on in your journey.

In addition, mindfulness practice, talking to friends and writing or dictating a diary can be helpful.

Family & Friends: Inform your family and friends about your condition and how they can help with practical tasks like cooking, childcare, walking the dog, and running errands. Having loved ones present during difficult times or providing company in a dark room can offer solace. If you want, ask them to do some research about the disease and read the information to you, if you cannot tolerate the light of screens. Don't hesitate to seek their assistance with your questions and in taking notes during eye consultations.

Join a support group: Joining a support group means you are not alone on this journey; it provides a safe space to share experiences, gain insights, and feel empowered by connecting with others who are on a similar path.

Seek Professional Support: Professional counsellors are valuable resources during the AK journey. They offer guidance, providing practical advice and emotional support.

Vitamins can be beneficial for your eyes: Choose a lot of fresh vegetables and fruits for your diet combined with nuts, seeds and valuable oils. You might also take some supplements. Here are a few frequently recommended additions:

• Vitamin C in very high dosage to help the optic nerve

• Omega 3 to help with dry eyes

• Zinc to help with infection

• Vitamin D for improving tear function, reducing the risk of macular degeneration, cataracts, and glaucoma.

Prepare Your Questions: List all the questions you might have beforehand, so you can ask them during your doctor's visit.

Capture the conversation: Ask your doctor for agreement to record his advice or ask a companion to take notes. Sometimes, the details can be overwhelming and blocking the full understanding.

Give them a call: If you experience any unusual symptoms such as increased redness, pain, or vision changes, do not hesitate to contact your clinic immediately, do not wait for your next consultation.

24/7 Contact Person: Request contact details from your doctor for immediate assistance or inquiries. It is crucial to have someone available to talk to when you require support the most.

Second opinion: If you do not feel comfortable and understood by your doctor, or your eye is worsening, seek a second opinion. Based on feedback from AK Warriors, we have compiled a list of clinics that have experience in treating AK.

Notify your employer, university or school: Inform about your rare eye condition and that treatment will require some time off. (We know that it may vary according to the regulations in your country, whether you have to inform them or not) Direct them to the website www.akeyefoundation.com

Doctor's Letter: Make sure to obtain a note from your doctor that includes the diagnosis. This will allow you to provide it to your employer if necessary, and also offer to discuss any accommodations or workload adjustments during your absence.

Inform about your rare eye condition and that treatment will require some time off. (We know that it may vary according to the regulations in your country, whether you have to inform them or not) Direct them to the website www.akeyefoundation.com

Doctor's Letter: Make sure to obtain a note from your doctor that includes the diagnosis. This will allow you to provide it to your employer if necessary, and also offer to discuss any accommodations or workload adjustments during your absence.

Educate Yourself: Learn as much as you can about your condition and treatment options. This will help feeling more in control and making informed decisions.

Keep yourself updated with reliable information about your condition and treatment options. However, avoid overwhelming yourself with too much information, and steer clear of sources that may cause unnecessary anxiety.