Hi! If you are reading this, it’s because you or someone you know is going through the AK journey. We know what it means to go through it and all the emotions, roller coasters and lack of information. Therefore, we have gathered information for you as a patient, supporting someone or for your network to understand what this rare eye disease means when someone is going through this journey.
IMPORTANT: Please always seek medical advice if you are in doubt or have questions of your contact lenses and / or eye condition.
What is Acanthamoeba Keratitis?
Acanthamoeba Keratitis, also referred to as AK, is an infection of the cornea, the clear ‘window’ at the front of the eye that can be very painful. The infection is caused by a microscopic organism called acanthamoeba, which is common in nature and is usually found in bodies of water (lakes, oceans, and rivers) as well as domestic tap water, swimming pools, hot tubs, soil, and air.
For more information click here
Referral to a specialist
When asking for a referral always advocate for a corneal specialist and/or infectious disease and even more if they are expert with AK.
Here you can find a list of hospitals that are recommended by AK Warriors.
How to diagnose and avoid misdiagnose
HOW TO DIAGNOSE
It’s very important that your eye professional always rules out first AK, before starting any kind of medication, specially steroids.
If your ophthalmologist is not an expert in AK, ask her/him to refer you to someone who is or look for a second opinion! Time is of the essence and the sooner you get the right diagnosis the better probabilities for you. Advocate for yourself and don’t accept a no.
The correct diagnosis for AK Warriors can take between days, weeks, and months to even a year or more.
When it comes to diagnose AK correctly there are different approaches, all depends on what is available and on the experience of your eye professional.
It’s very important that you share with your doctor if you are a contact lens user and your history with them (if showering, swimming, water sports, gardening, working on soil or working on the roof)
For more information on how to diagnosed click here
For more information on hospitals with experience click here
AK is sadly easily misdiagnosed. If you are experiencing any of the symptoms or you have been in contact with water, ask your doctor to rule out AK.
Based on a survey carried out amongst AK Warriors in the support group, most of the time AK is misdiagnosed as a bacterial, viral, or fungal infection, we are talking around 80% and from that 50% as Herpes Simplex Virus (HSV).
It’s very important that you do not start on steroids without confirmation that AK is not present. Steroids make the situation worse due to the potential risk of promoting encystment and increasing the number of trophozoites.
Herpes Simplex Virus
There is no standardized protocol treatment. Currently AK Warriors are being treated with off label and unlicensed medication in the form of eye drops, injections or oral medication. Sometimes therapeutical partial or full thickness corneal transplantation to debulk the eye from the parasite is recommended by the eye professional. More information
AK treatment depends on the experience of your specialist.
The truth is that you can have 5 different approaches in the same city, each doctor treats based on her/his own knowledge and experience. It’s important that you can trust your doctor fully and that further opinions are welcome.
Although it’s scary but the priority of the doctor is first to eradicate the parasite and then help you regain your vision. For some AK Warriors their sight can be good enough after AK treatment but for others they might need a corneal transplant once AK is eradicated (which can never be confirmed 100%).
Each journey is unique!
Do not compare to others.
It’s not just an eye infection that will go away in a couple of days/weeks. The duration of the treatment may vary from 6 months to several years depending on each case.
Prepare yourself for a rollercoaster.
As from the beginning of the journey please ask for good pain management.
Ophthalmologists often need to refer you for this to a pain specialist. It’s not about being strong. It’s about being able to cope through the journey and AK-pain can be excruciating! So, it’s a must to give yourself the chance to have good pain medication to help you through the journey.
For some people mild pain medication works, for others it needs to be on the higher end or even never blockers which focus on the trigeminal nerve pain which many of us suffer.
Each person’s journey is unique!
As AK Warrior you can experience no energy, as your body is trying to fight the infection, the inflammation, coping from the excruciating pain, your eye can´t stop tearing; your sinus, head and jaw hurts, the light sensitivity and the deprivation of sleep.
Your mind might be spinning, depressed, hidden in a dark room, isolating from the world, feeling you will never make it out of it and/or you are missing in life.
Many of us end up with medical PTSD afraid of a relapse, water, traumatized by the intensity of the therapies, procedures and the way we were treated. So please reach out to a mental health professional to help your through the journey.
It’s important that you are surrounded by people that understand your journey.
Ask them to read information about AK to you. Accept help in everyday tasks. You need to rest as often as possible to give your body the energy for fighting and healing.
Your family and friends need to understand how this illness is affecting you and what kind of help they can provide to help you through this time. For example: cooking meals, taking care of your children, taking care of the household chores, doing the shopping, taking you to doctors’ appointments. Being there with you in your dark room to support you and have some company. Perhaps wearing sunglasses like you to help feel like you are not the one!
It can be very comforting to meet people that speak the same “language” of pain, emotions, challenges with AK. Join a support group, where you can learn more about what you are going through, share your thoughts, vent, receiving tips for how to handle smaller than major challenges and get the knowledge to be able to advocate for yourself!
In our support group we welcome not only the AK Warriors, family, friends, but also eye professionals, opticians, optometrist, ophthalmologist, corneal specialist, researchers, psychological professionals and any other that wants to understand the impact of Acanthamoeba Keratitis and learn from the patient’s perspective.
Practical Tips when going through AK
You are not alone – Hang in there! Please consider joining a Support Group as soon as you can, you will realize you are not alone, we understand what you are going through.
Support Team near you! – Important that you have a network of support around you.
Your vision is not the priority right now! is eradicating the parasite; then doctors will focus on helping regain vision.
Please do not expect the worst. Each story is unique and at its own tempo. Cases can vary from regaining your vision, partial vision loss, total vision loss or lost of the eye.
It’s a long and slow journey. It’s not just an eye infection that will go away in a couple of days/weeks, it can be a minimum of six months to several years in the worst cases.
A rollercoaster: there will be ups and downs during the journey … is not a one direction.
Not all Eye Professionals are experienced with AK – it’s important that if you are experiencing some of the symptoms, particularly if you wear contact lenses, that you insist on being seen by someone who is preferably a Corneal Specialist.
Second opinion – if you don’t feel comfortable or being understood/ heard by your actual doctor, reach for a second opinion. There is a list of hospitals that have experience on AK, based on the AK Warrior’s input.
Confocal scanner – in being diagnosed there are several ways, and some might take time or even provide a fault negative. We recommend asking your specialist for a confocal scanner.
LIGHT VS DARKNESS
Light is not our friend now; it not only increases our pain but also takes up our energy. So here some tips:
Dark Room: In your house, perhaps your bedroom or guest bedroom, it is a good idea to create a dark room, by covering the windows with “blackout curtains” or something similar – like big black plastic bags; where you can have the freedom to rest.
Dark Glasses: Try and get a good pair of dark sunglasses (even the type that goes on top of your glasses) – always wear them, even in the house if necessary.
Hat/Visor: It is also helpful to get a hat / visor with a “rim” to help filter the light, sunlight, or artificial light.
Good pain management is crucial!
Gel Pack / Cold Compress: To help with pain it is good to use gel pack (cold or warm) or cold compress (boiled, cooled water).
Keep the drops cold. Many drops are recommended to be kept in the fridge. But also, by being cold, it can help with the burning sensation (please read the instructions of the bottle first as some drops must not be put in the fridge!). You might want to buy a mini cooler to carry with you when traveling.
Drops Schedule is important not to skipped or stop them unless told by your doctor. We know it can be hard but it’s the “big army” to attack the parasite (active = Trophozoites and hibernating = Cyst)
Wait between drops: when taking multiple drops, wait 5-10 minutes between each medication. Otherwise, you will just be rinsing the first drop out with the second drop and you will reduce the effectiveness of your medications and treatment. Checking lists or apps on mobile can be very helpful.
Vaseline: You can use Vaseline to protect your skin around your eyes from the drops or the non-stop watering.
Temper down the drops instead of stopping them at once. Some doctors recommend dropping for a minimum of one year, especially when it comes to the cyst form. Of course, the intensity of the drops will be reduced gradually.
Tiredness & Depression: as you are going through this, it’s not only your eye fighting an infection, but also your body and mind. You might feel isolated and lost while dealing with this illness. Please look for professional mental health and/or join the Support Group to share your experiences and to receive support. It will help you to understand that what you are going through is “normal” within the journey.
Sleeping: It might help with the pressure / pain to sleep with your head elevated.
Shower/ cleaning: avoid water on your face and ask your doctor how to keep your eye clean.