Case History 7: Acanthamoeba Keratitis, From My Perspective

I have been asked to share my perspective from the patient’s point of view regarding the management of Acanthamoeba Keratitis and to share my thoughts on how to improve communications and advice to patients.  What follows is my view from the inside, looking out.

I had worn contact lens for 48 years and loved them.  I didn’t sleep in them, wear them while swimming, or go in hot tubs while wearing them.  I knew the importance of hand washing, replaced my contact lenses on a timely schedule, and made yearly visits to my eye doctor. So how did I get this devastating disease?

I wore contact lenses.  While the answer might seem simple, 85% of patients contracting AK wear contact lenses.

Management of Condition

I do not purport to give medical instruction but there are some important points I want to stress. Acanthamoeba Keratitis is hard to diagnose and is frequently misdiagnosed and mistaken for Herpes Simplex Virus .  If an eye irritation has not improved in a few days with medication, and the symptoms include swollen eyelid, feeling of a foreign object  in the eye, photosensitivity, tearing, blurred vision, and pain that is beyond what  would be expected with Herpes, consider  the possibility of AK.  Early intervention is crucial in the outcome.  Cultures are frequently false-negative so a confocal microscope examination, which shows the double walled cysts, is of great help. Medications are toxic and difficult to obtain and the dosage must constantly be monitored and adjusted. I used an Excel spreadsheet to keep track of my schedule.

Be aware that the pain with AK is excruciating. Having given birth to a 9 lb. 3 oz. baby without medication, I knew I could tolerate pain so I did not expect this disease to bring me to my knees, time and time again. Pain management is an important aspect and should not be approached lightly. I describe the pain as a feeling that someone has thrown hydrochloric acid in your eye and then stabbed it with knives. Histamines kick in and cause the nose and eyes to pour.  These “jolts� of pain come in waves and can last several minutes to hours and leave the patient exhausted. 

The world of an AK victim shrinks down to sitting in a darkened room and the patient appears to be depressed or withdrawn.  Any stimulation such as noise, light, or activity is too much.  Sleeping is difficult because of the pain and pressure. For weeks I sat propped up in a recliner with a stuffed animal under my chin to keep my head from turning.  Fatigue is noticeable as the body fights this intruder. The patient is physically unable to carry on normal activities because the medications must be administered as often as 40 times a day or more.   Poor appetite is common with resulting weight loss.  Nausea is a side effect and may be caused by the variety of drugs. My eyebrow muscle thickened because the eye was constantly trying to protect it from light. The pain can extend into the cheek and side of the face or produce a headache.   The sight is drastically affected, deteriorating steadily to the point where only hand movements can be discerned 12-18� in front of the eye.  The eye is swollen shut, tender, and burning and the patient is unable to open the eye without manual assistance.  The appearance of the eye is grotesque due to the scar tissue that builds up.  I thought I looked like a corpse or a husky dog with a severe cataract. 

Your patient is going through a life altering event and they need your support and expertise.  Be honest with them. This is a very serious disease with potentially dire results.  No two cases are alike and no two patients respond to the medications in the same way. This is not a disease where medication is prescribed for 10 days and the patient recovers. If you have not seen or treated a case before, consult with someone who has. The treatment involves several months, or even years. Intraocular pressure must constantly be monitored for changes.  Glaucoma and cataracts can be associated with medications and the disease. 

So how did my case play out?  I was originally diagnosed with Herpes in November 2005. Within a short time my sight diminished to hand movements 18� in front of my eye.  In January 2006 I saw a corneal specialist who correctly diagnosed AK based on symptoms and a confocal exam.  In spite of numerous medications, the excellent care of three specialists, and three surgical procedures, nothing stopped the amoeba.  I felt like something out of a science fiction movie. When a vitreal tap and inject showed that the amoeba had moved to the back of my eye, there was the possibility that it could be in the optic nerve, and could travel to my brain and kill me.  In June 2006 I underwent enucleation of my eye and was fitted for a prosthetic eye in August 2006.

How can communication and advice to a patient be improved?

1. You are the front line defence. Educate your patients about water related risks. Whether they are new or long time contact lens wearers, give them verbal and printed instructions and emphasize that water and contacts do not mix.  Better that a patient hears it several times, than not at all.
2. Patients should know what solution they are using and why.  According to research, some solutions may not be compatible with some contact lens materials.
3. Give patients other options such as daily disposable lenses, prescription swim goggles, or glasses. Don’t let cost or fashion be deciding factors.
4. Encourage solution and contact lens manufacturers to clearly state water related risks on their packaging.
5. Refer the patient to a specialist if you are not sure about diagnosis and treatment.  Confer with colleagues regarding treatment, learn all you can about AK, and encourage further research.

Useful links:

A web forum was provided to Paige and fellow AK sufferers a year ago by Prevent Blindness America.  This forum is probably the first and only current support group for AK victims. They provide support for others experiencing the disease and have people from around the world, including members from the UK. 

Images reproduced from Clinical Ophthalmology (J Kanski) with kind permission from Elsevier Health Ltd.

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