Practical Information for AK patients and their network (family and friends)​

As patients having suffered or still suffering from Acanthamoeba Keratitis, we know what it means to go through it and all the emotions, rollercoasters and lack of information and therefore we have gathered a list of practical information for you as a patient or your support group (family and friends)

Is important to join a support group as soon as you can you if you are a patient so you realize you are not alone and also ask your support group to join so they can understand better what you are going through and at the same time help in the best way.

  • Please always seek medical advice if you are in doubt or have questions of your contact lenses and / or condition.
  • YOU ARE NOT ALONE - HANG IN THERE
  • Please consider joining the SUPPORT GROUP
  • NOT ALL DOCTORS ARE FAMILIAR WITH ACANTHAMOEBA KERATITIS (AK) - Not all Eye doctors are experienced with AK, so is important that if you are experiencing some of the symptoms, particularly if you wear contact lenses, it is very important that you insist on being seen by a CORNEA SPECIALIST.
  • Please consider joining the SUPPORT GROUP
  • NOT ALL DOCTORS ARE FAMILIAR WITH ACANTHAMOEBA KERATITIS (AK) - Not all Eye doctors are experienced with AK, so is important that if you are experiencing some of the symptoms, particularly if you wear contact lenses, it is very important that you insist on being seen by a CORNEA SPECIALIST.
  • Once seen by a specialist and have undergone scrapes/biopsies, it is worth noting that these results will most often (very common) come back as negative. In this case please ask your specialist if they can use a CONFOCAL SCANNER which tends to give more reliable results.
  • Try and get a good pair of DARK SUNGLASSES – wear them at all times, even in the house if necessary.
  • It is also helpful to get a HAT with a “rim” to help filter the light, sunlight or artificial light.
  • In your property, perhaps your bedroom, it is a good idea to make a DARK ROOM, by covering the windows with “blackout curtains” or something similar – I used big black plastic bags.
  • KEEP DROPS IN THE FRIDGE – by being cold it can help a little with the pain (but please read the instructions of the bottle re: storage first as some drops must not be put in the fridge.
  • PLEASE DON’T EXPECT THE WORST – EACH STORY IS UNIQUE …
  • ASK FOR STRONG PAIN MEDICATION – Sometime the pain can be unbearable so please do not wait until is extreme, ask your doctor for some good pain medication. If you are offered to go to a Pain Clinic this will also be very helpful for you.
  • EACH DOCTOR/CITY/COUNTRY have their own protocol.
  • IT IS ADVISED TO TAKE THE DROPS FOR A MINIMUM ONE YEAR - My Doctor here in the Netherlands recommends doing drops for one year to be sure it rids the active amoeba’s and the passive ones. Of course, the intensity of the drops will be reduced gradually.
  • TIREDNESS and DEPRESSION can be part of the AK – as you might feel isolated and lost while dealing with this illness. Please look for help or join the AK Support Group to share your experiences and to receive support. It will help you to understand that what you are going through is “normal”.
  • SUPPORT TEAM – Important that you have a network of support around you. Your family and friends need to understand how this illness is affecting you and what 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. Being there with you in your dark room to support you. Perhaps wearing sunglasses like you to help feel like you are not the one!
  • THE JOURNEY OF AK IS A LONG JOURNEY AND PATIENCE IS NEEDED TO HELP YOU GET THROUGH THIS – It can be a minimum of six months treatment to one year and sometimes longer in some cases.
  • Your Doctor will FIRST FOCUS ERADICATING THE AK before they concentrate on vision. Some people are healed, and their sight is as good as it was before the AK with drops only. Others might need a CORNEA TRANSPLANT for various reasons.
  • You might find that over time you get a CATARACT – This is due to the number of drops that are used. This is normal and can make your vision cloudy.
  • To help with pain it is good to use COLD COMPRESS (boiled, cooled water) over your eyes to help ease the symptoms.