This page is specially designed in dark mode to make reading more tolerable for you. We know how hard it is to tolerate any light in your situation.
We understand that you or someone you know is dealing with Acanthamoeba Keratitis (AK). This is a very challenging journey both physically and emotionally. We know what it means to go through it, the emotional roller coaster and the lack of information readily available. We provide resources to help you navigate through this difficult time. Remember, you are not alone.
It is important to seek medical attention if you suspect you or someone you know may have AK. Early diagnosis and treatment help prevent further damage to the eye and improve the chances of a successful recovery.
What is Acanthamoeba Keratitis?
Acanthamoeba Keratitis, also referred to as AK, is a rare and serious infection of the cornea, the clear ‘window’ at the front of the eye. The infection is caused by a microscopic organism, which is common in water as well as soil and air. Contact lens users are at a higher risk of contracting this sight-threatening disease.
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Referral to a specialist
AK must be treated by specialists. You need to see a corneal specialist who is experienced in the treatment of AK. In some cases an infectious disease specialist can also be of benefit to the patient. Make sure that a pain specialist is involved in your treatment as well. These doctors will ensure that you receive the most effective treatment possible. Remember, it is crucial to find a specialist you can trust and seek a second opinion if needed, especially in complex situations. Here is a list of clinics and specialists that have been personally recommended by AK patients.
It is important to remember that early diagnosis and treatment are key in preventing permanent damage to your eyes.
How to diagnose and avoid misdiagnose
Diagnosing AK can be a complex process, and sometimes, even the best doctors can misdiagnose a patient. Unfortunately, up to 80% of AK cases are initially mistaken for other conditions because there are many similar symptoms.
You may be first diagnosed with a bacterial, viral, or fungal infection, often leading to the prescription of steroids. However, it is vital that you do not start on steroids until AK is ruled out, as steroids can make the situation more devastating by increasing the number of trophozoites and promoting encystment.
It is important for the diagnosis to mention any history of contact lens use or smaller eye irritations by soil, sand or plants. If you are uncertain about your diagnosis, or if you are not responding to treatment, it is essential to get a second opinion from a specialist. Time is of the essence, and the sooner you get the correct diagnosis, the better the possible outcome will be. Your eyesight is too precious to take chances with. Remember, you are your best advocate, and it is essential to take an active role in your healthcare.
* Source (Acanthamoeba Keratitis Support Group [internet]. Netherlands. c2021-2022 [cited 2022 Jan 22].
80% of AK cases are misdiagnosed
Half of the misdiagnoses with Herpes Simplex Virus
Unfortunately, there is no standard treatment protocol for AK, and different doctors may have different approaches to treating the infection.
Currently, AK Warriors are being treated with off-label or unlicensed medication. This can be not only in the form of eye drops but also as injections or oral medication. In some cases, therapeutical corneal transplantation (partial or full thickness) may be recommended to remove most of the parasite from the eye. However, the approach used for treatment depends on the experience of the specialist, the availability of medication, and of course on the clinical presentation of AK.
It is important to trust your doctor fully and therefore to seek further opinions if you do not feel safe or if you have a very complex case. The treatment can have setbacks and unexpected changes; making your journey a challenging rollercoaster ride.
The doctor’s priority is first to eradicate the parasite and then in a second phase to help you regain your vision. Some patients’ vision can be restored with medicinal treatment alone, while others may need a corneal transplant after the infection is eradicated. Be aware that the outcome of any intervention is hard to predict.
The duration of AK infection varies depending on various factors such as the severity of the infection, the stage at which it was diagnosed, and the patient’s overall health condition. In many cases, the infection lasts for 3-6 months or even longer than a year if misdiagnosed and difficult to treat.
Advocate for pain management.
If you have been diagnosed with AK, it is important to seek proper pain management right from the beginning.
We advise to seeking the assistance of a pain specialist, as ophthalmologists may not have the expertise to manage AK-pain. It is important to note that requesting pain management does not reflect personal weakness.
Effective pain management can make a significant difference in managing the excruciating pain associated with AK. Mild pain medication may be sufficient for some individuals, while others may require stronger medication or nerve modulators that target the trigeminal nerve pain which is often associated with AK. Sleep is essential to fight infection and proper pain control allows your body to rest and to get you through the challenges ahead.
Additionally, using warm or cool compresses, sleeping with an elevated head position or applying artificial tears may help soothe the eye and relieve discomfort.
Each person’s journey is unique.
Living with AK can be incredibly challenging, both physically and mentally. Coping with the excruciating pain, sensitivity to light, sleep deprivation and fatigue can take a toll on a person’s mental health, leading to feelings of depression and isolation. Many AK Warriors find themselves hiding away in dark rooms, feeling like they will never make it out of the disease.
In addition to these physical and mental challenges, many AK Warriors also experience medical PTSD (post traumatic stress disorder). Having gone through intense procedures and therapies, many are traumatized by their past experiences. Commonly there is a constant fear of relapse, of water and of the use of contact lenses. Many triggers remind an AK Warrior of their struggles with the disease.
It is normal to experience a range of emotions, including fear, frustration, and anxiety. For AK Warriors it is important to find resources which help them cope with the challenges they face. These can include talking to friends, writing a diary, going for a walk after sunset, practicing meditation and focusing on the present moment. As soon as you have time and are physically able, the help of a therapist for psychological support can be very valuable.
Dealing with a serious illness like AK can be a challenging and exhausting experience. It’s important to surround yourself with people who understand your journey and are willing to provide help with everyday tasks. Resting as much as possible is also crucial to give your body the energy it needs to fight and heal.
Your family and friends should be informed about how the illness is affecting you and what kind of help they can provide. Practical tasks like cooking meals, taking care of your children, doing household chores, and running errands can be a big help. Even just having someone to sit with you and offer company in a dark room can provide comfort. Ask them to do some research and to read information to you about the disease if you can’t tolerate the light of screens. You will need a lot of eye consultations. It can be helpful to have someone with you for support, asking your questions and taking notes about changes in the treatment and options.
Sharing a home with an AK patient is difficult for everyone. Coping with the darkness required and the many alarms for medication is very demanding. It is important to stay positive, patient and not to get upset despite all the difficulties.
Joining a support group can also be a great way to connect with others who are going through similar experiences. These groups can offer a safe space to share your thoughts, vent, receive tips on how to handle challenges, and gain knowledge to advocate for yourself. Meeting people who speak the same “language” of pain, emotions, and challenges can be extremely comforting and empowering.
you don’t have to
go through this alone.
Practical Tips when going through AK
- Seek help from family, friends, and neighbours for daily chores or for taking you to appointments.
- Do not push yourself; rest as much as possible. Your body is fighting a serious illness and needs all its strength for healing. Use your support team!
- Stay positive! Each story is unique and unfolds at its own pace. Please do not expect the worst.
- Try not to worry about the challenges you might face or about what you possibly cannot do any longer. Take one day, sometimes one hour, at a time.
- AK is a long and slow journey. It is not just an eye infection that will go away in a couple of days. You will require a lot of patience for several months.
- The first priority is to eradicate the parasite. Once you are free from the parasite, doctors will focus on helping you to regain vision.
- You are on a rollercoaster ride: There will be ups and downs during the journey … perhaps with many detours on the route.
- Not all eye professionals have experience with AK. Insist on being treated by a corneal specialist with AK experience. Ask how many AK cases she/he has treated so far.
- 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 hospitals that have experience treating AK.
- Confocal scanner: There are different ways of being diagnosed, and some might take several days or even result in a false negative. We recommend asking your specialist to use a confocal scanner, which is the most useful and reliable tool in diagnosis.
- Mental health: The mental challenges you face with AK can be overwhelming… do not hesitate to seek help from a professional.
LIGHT VS DARKNESS
- Light is not your friend right now; it not only increases your pain but also robs you of energy.
- Dark room: Create a dark room in your home where you can rest. Do this by covering the windows with “blackout curtains” or black plastic bags.
- You might need to cover the light in the fridge as well.
- During these days and weeks in darkness audio books, music or meditation may help to change focus.
- Dark glasses: Get a good pair of dark sunglasses of the type that go on top of your glasses. Always wear them, even in the house if necessary.
- To block the light even further use eye patches for your glasses rather than a patch directly over your eye. Your eye needs air, otherwise you increase the risk of additional infection.
- Hat/Visor: It is also helpful to get a hat with a “rim” to help filter the light in and outdoors.
- Good pain management is crucial
- If your current pain medication does not meet your needs ask your doctor about nerve blockers!
- Please find detailed information here.
- Gel pack: Experiment with a cold or warm gel pack to help with pain (every day can be different). A compress heated in boiling water and then cooled may also be helpful.
- Keep the drops cold. It can help with the burning sensation. Please read the instructions on the bottle first, as some drops must not be put in the fridge!
- Experiment with insulated medication travel bags (easy to find as insulin travel cases), an insulated thermos filled with ice cubes or any kind of insulated bags with a frozen cool pack to keep your drops cool when away from home.
- Use lubricating eye drops without preservative, which help to sooth the eye.
- Scheduling your drops: Do not skip or stop any drops unless instructed by your doctor. This can be difficult, but it is of the highest priority.
- Keep track of the drops you are applying. Use a special app or a list to tick the medication off. In addition, the alarm on your mobile allows you to choose different alarm melodies for each medicine, which is very helpful.
- 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 treatment.
- Vaseline: You can use Vaseline to protect the skin around your eyes from the drops and the nonstop tearing.
- Tapering eye drops: Reduce the drops gradually instead of stopping them all at once. Some doctors advise continuing the drops for a minimum of six months to one year, especially when it comes to the cyst form.
- Sleep is of the upmost importance to advance recovery.
- It might help with the pressure and pain to sleep with your head elevated.
- During times of intense tearing or vulnerability of the eye, cover your pillow (or sheet) with a fresh towel that you can easily change once a day.
SHOWER / CLEANING
- 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. Ask your doctor how to keep your eye clean.
- Use goggles for showering, washing your hair or bathing your children.