AK PATIENT
Know you are not alone
Here is essential information to assist you in advocating for yourself. Because of the strength and determination, we exhibit while facing this eye disease, we refer to each other as “AK Warriors”.
THE FUNDAMENTALS
What is Acanthamoeba Keratitis?
Acanthamoeba Keratitis, also known as AK, is a rare and severe infection that affects the cornea, the transparent 'window' located at the front of the eye. This infection is triggered by a microscopic organism found in water, soil, and air. Contact lens users are at a higher risk of developing this vision-endangering condition. Symptoms of AK typically include eye pain, redness, blurred vision, sensitivity to light, and excessive tearing. Early diagnosis and treatment are crucial to prevent long-term damage to the eye.
What kind of specialists do I need?
For AK treatment, you require a multidisciplinary specialized team to help you through the journey and provide a better quality of life:
- a corneal specialist highly experienced
- an infectious disease specialist in some cases if needed
- a pain specialist
- a psychological professional for mental health
Choose trustworthy specialists, ask about their experience with AK (number of cases they have handled, and the outcomes achieved), consider second opinions for complex cases.
It can be helpful to see a local ophthalmologist who works together with your specialist in order to get frequent medical support.
How to diagnose and avoid misdiagnosis?
Diagnosing AK can be challenging, leading up to 70% to 80% misdiagnosis (herpes simplex virus, bacterial infection, fungal infection amongst others). Starting steroid treatment before ruling out AK is risky as it can worsen the condition. It is important to report contact lens use, eye irritation by soil, sand or water contact prior to first symptoms to your doctor. Seek a specialist’s opinion if unsure about the diagnosis or treatment.
Be aware that an early correct diagnosis is crucial in AK and protect your vision by advocating for yourself.
What treatments are currently available?
A standard of care for AK has yet to be established. As a result, doctors use different approaches. Treatment involves off-label medications such as eye drops, injections or oral drugs. In 2024, the European Medical Agency (EMA) approved Akantior (PHMB, Polyhexanides 0,08%), the first official therapy for this condition available in Europe. It is important to note that approval and availability do not guarantee accessibility. Accessibility can vary depending on the country, province, city, hospital and doctor.
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.
How long does AK last?
The duration of an 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 can prolong it, creating treatment challenges.
Depending on your individual situation restoring vision after the infection can take from months to years.
What can help with eye drops?
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 5-10 minutes between applying different drops.
Storing Drops Properly & Travelling:
Keeping drops cold can alleviate the burning sensation. Consider using cool packs, insulated medication travel bags like insulin cases or insulated thermoses 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 is essential to follow your doctor’s advice and not 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 that anti-amoebic eye drops are tapered gradually according to the individual patient's response, rather than stopped abruptly. This approach is particularly important for cyst-related treatments, with some doctors advising a minimum continuation period of six months to one year.
What is the correct way to apply the eye drops?
Watch this video for a step-by-step guide through the process.
- Wash your hands with soap and dry them well.
- Open the bottle and place the cap on a clean towel.
- Hold the bottle with your dominant hand, tilt your head back and look up at the ceiling.
- Use the index finger of your other hand to gently pull down your lower eyelid to make a small pocket.
- Squeeze one drop into the pocket.
- Make sure the bottle dose not touch your eye, fingers or any surface.
- Use a tissue to wipe away any extra medicine, as some can irritate the skin around your eye.
- Make sure the drop touches the surface of your eye. If you think you missed your eye, apply another drop right away.
- If you are blind in that eye, you will need a different method to ensure the tip of the bottle does not touch your eye. If you can tolerate light, using a mirror can help, or you can ask someone to assist you.
REMEMBER
IF YOU ARE USING MORE THAN ONE EYE DROP, WAIT 5-10 MINUTES BEFORE PUTTING THE SECOND DROP.
How to Maximize Medicine Absorption and Minimize Side Effects?
To minimize the absorption of the medicine into the bloodstream, which could cause side effects, and to maximize the amount of medicine absorbed into your eye, close your eye for 1-5 minutes after applying the drops. Do not blink and gently press your index finger against the corner of your eyelid near the nose to close the tear duct that drains into the nose.
Pregnant?
If you are undergoing treatment for AK during pregnancy, this method is highly recommended to be on the safe side. Another option is to block the tear duct using punctal plugs. Ask your doctor to help you find the best solution for your situation.
PAIN MANAGEMENT & WELL BEING
Pain
With AK you are most likely experiencing horrific pain. Standard pain killers may not be effective. 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 over-the-counter pain relievers 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 & Darkness
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.
- 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.
Sleep
Feeling Tired:
It is completely normal to feel tired when your body is combatting an infection that impacts not only your eye but 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.
Wellbeing
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.
Cleaning your eyes & Make-Up
Eye Cleaning:
Prior to cleansing your eyes, seek advice from your doctor on maintaining proper eye hygiene. It’s 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’s 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 by new to avoid any risk of reinfection.
Showering & Swimming
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 in pools, hot tubs, lakes or the ocean until fully recovered. Once healed, we recommend using goggles for added protection.
SUPPORT SYSTEM
Shaken Emotions
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's crucial to consider 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.
Getting Support
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 during eye consultations with your questions and taking notes.
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 some 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.
Medical Aspects
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, don't 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's crucial to have someone available to talk to when you require support the most.