As patients having suffered or still suffering from Acanthamoeba Keratitis, we know what it means to go through it and all the emotions, roller coasters and lack of information and therefore we have gathered a list of practical information for you as a patient, supporting someone or your network understanding what you are going through.
Is important to join a support group as soon as you can you if you are a patient so you realise 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.
IMPORTANT: 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 a 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 / VISOR 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.
- To help with pain it is good to use COLD COMPRESS (boiled, cooled water) or GEL PACK in the freezer or warm
- or warm- can be used to help the pain
- 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. Sometimes the TRIGEMINAL NERVE can be affected and needs special medication.
- Take you PAIN MEDICATION on the hour to build it up.
- EACH DOCTOR/CITY/COUNTRY have their own protocol.
- DROPS SCHEDULE is important not to skipped tor stop them unless told by your doctor. We know it can be hard but is the “big army” to attack the parasite (active = Trophozoites and hibernating = Cyst)
- SPACE OUT YOUR 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.
- IT IS ADVISED TO TAKE THE DROPS FOR A MINIMUM ONE YEAR – Some doctors advise to drop for minimum one year. 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.
- You can use VASELINE to protect your skin around your eyes from the drops or the non stopping watering.