Hi! If you are reading this, it is because you or someone you know is going through the AK journey. We know what it means to go through it, the emotional roller coaster ride, and the lack of information readily available. So, we have gathered information for you either as a patient, as someone supporting a patient, or for your network to understand what this rare eye disease means for someone going through this journey.
IMPORTANT: Please always seek medical advice if you are in doubt or have questions about 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 and/or infectious disease specialist and particularly someone who is expert or experienced with AK.
For more information on hospitals with experience based on AK Warrios click here
How to diagnose and avoid misdiagnose
HOW TO DIAGNOSE
It is especially important that your eye professional first rules out AK, before starting any kind of medication – otherwise there is a possibility of making the AK condition worse.
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 the possible outcome will be for you. Advocate for yourself and do not 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
The correct diagnosis for AK Warriors can take between days, weeks, and months to even a year or more.
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.
Most of the time 80%* it is misdiagnosed as a Herpes Simplex Virus (HSV), bacterial, viral, or fungal infection.
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.
* Source (Acanthamoeba Keratitis Support Group [internet]. Netherlands. c2021-2022 [cited 2022 Jan 22].
Herpes Simplex Virus
There is no standard treatment protocol. Currently AK Warriors are being treated with off label and unlicensed medication in the form of eye drops, injections, or oral medication (link to how to treat from medical community). Sometimes therapeutical partial or full thickness corneal transplantation to remove the majority of the parasite from the eye is recommended by the eye professional. For more details click here
AK treatment can depend on the experience of your specialist.
The truth is that you can have 5 different approaches in the same city, with each doctor treating based on his/her own knowledge and experience. It is important that you can trust your doctor fully and that further opinions are welcome.
Although it is scary, the priority of the doctor is first to eradicate the parasite and only then help you regain your vision. For some AK Warriors, their sight can be good enough after AK medicinal treatment, but others might need a corneal transplant once AK is eradicated (which can never be confirmed 100%).
Each journey is unique!
The duration of therapy may last from several months to several years depending on each case.
Right from the beginning of the journey, please ask for good pain management.
Ophthalmologists often need to refer you to a pain specialist. This is not about being personally strong: it is about being able to cope through the journey – AK-pain can be excruciating! So, it is necessary 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 nerve blockers which focus on the trigeminal nerve pain which many of us suffer.
Each person’s journey is unique, but many AK Warriors suffer from fatigue!
The AK Warrior’s body is trying to fight the infection: your eye can´t stop tearing, your sinus, head and jaw hurts, the inflammation, coping from the excruciating pain, the light sensitivity, deprivation of sleep and your mind spinning, hiding away in a dark room, depressed, isolating from the world, feeling you will never make it out of it and/or you are missing so many plans and experiences.
Many of us end up with medical PTSD, afraid of a relapse, afraid of water, traumatized by the intensity of the therapies, procedures and the way we were treated.
It is important that you are surrounded by people that understand your journey. 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. Practical things, for example: cooking meals; taking care of your children; taking care of the household chores; doing the shopping; taking you to doctors’ appointments. Also, just other supportive gestures, such as being there with you in your dark room to support and give you some company, and perhaps wearing sunglasses like you to help you feel like you are not the only one!
It can be very comforting to meet people that speak the same “language” of pain, emotions, and challenges with AK. Join a support group, where you can learn more about what you are going through, share your thoughts, vent, receive 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, and friends, but also eye professionals, opticians, optometrists, ophthalmologists, corneal specialists, researchers, psychological professionals, and anyone else that wants to understand the impact of Acanthamoeba Keratitis and learn from the patient’s perspective.
You can join by clicking on the button “Join Support Group” or scan the QR code.
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, and we understand what you are going through.
Support Team near you! – It is important that you have a network of support around you.
Please do not expect the worst. Each story is unique and runs at its own pace. Cases can vary from regaining your vision, partial vision loss, total vision loss or lost of the eye.
It is a long and slow journey. It is 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. Your vision is not the priority right now! is eradicating the parasite; then doctors will focus on helping regain vision.
A rollercoaster: there will be ups and downs during the journey … perhaps with many diversions en route.
Not all Eye Professionals are experienced with AK – it is 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 do not feel comfortable or understood/ heard by your actual doctor, ask for a second opinion. We have a list hospitals that have experience with AK, based on the AK Warrior’s input.
Confocal scanner – there are different ways of being diagnosed, and some might take time or even provide a false negative. We recommend asking your specialist for a confocal scanner which is the most useful and reliable tool in diagnosis.
LIGHT VS DARKNESS
Light is not our friend right 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! More information.
- Gel Pack / Cold Compress:To help with pain it may be helpful to use a gel pack (cold or warm, experiment!) or cold compress (boiled, cooled water).
- Keep the drops cold.Many drops are advised 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!)
- Drops Schedule is important not to skip or stop them unless told by your doctor. We know it can be hard, but it is the main weapon to attack the parasite (active = Trophozoites, 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 mobiles can be extremely helpful.
- Vaseline: You can use Vaseline to protect the skin around your eyes from the drops and the nonstop watering.
- Temper down the drops instead of stopping them immediately. Some doctors advise to continue dropping for a minimum of one year, especially when it comes to the cyst form. Of course, the intensity of the drops should be reduced gradually.
- Tiredness & Depression: as you are going through this, it is 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.
It might help with the pressure / pain to sleep with your head elevated.
SHOWER / CLEANING
Avoid water on your eyes and ask your doctor how to keep your eye clean.