When did Acanthamoeba Keratitis enter my life?
My name is Juliette Vila Sinclair-Spence and Acanthamoeba Keratitis entered my life at the end of February 2017. My right eye started bothering me, like if I had an eyelash or something else inside it, I was wearing my contact lenses so I took the right contact lens out, and as I was not home I washed it with water and put it back on my eye… in less than 24 hours my life changed … slowly but steady the pain started to increase, itchy, feeling something inside, watery eye and I was beginning to have high light sensitivity. And what is also important to know is that I went swimming with my contact lenses in August 2016 (in a pool in italy) and the next day i had problems with my contact so I through them away … seems the Amoeba went on sleeping mode.
One day later I went to my general practitioner, who immediately sent me to the eye doctor at the hospital. Because I wear contact lenses the first thing they assumed and started treating me for was a bacteria, so they gave me antibiotics… Three days later I couldn’t bear the pain (standard painkillers were not working) and the medicine they had given me was not making a difference, so I went on a Sunday to the ER. I was attended by a highly respected cornea specialist Dr. Rijneveld who gave me another type of medicine, covered my eye and asked me to return the following day.
Non-stop visits to the Eye Clinic
That ended being the beginning of me visiting the eye department two to four times a week at the hospital. Two weeks later (17th march 2017) as the pain and light sensitivity kept getting worse and worse, plus I was completely debilitated, the doctors (Dr. Rijneveld and Dr. Wolff) wanted to make sure they knew what they were dealing with before starting any possible treatment (including steroids), as they had already done scrapes to the cornea to make a biopsy, check the contact lenses and they also checked the contact lenses case.
Meanwhile with the time this was all taking place, my pain threshold was becoming beyond severe. The doctor began to suspect Acanthamoeba Keratitis but wanted to be certain. They had to be careful if they thought of injecting my eye with steroids to help inflammation, because if it did turn out to be AK, it would be something they must not do as the parasite (AK) feeds on steroids It is recommended that steroids can only be given once treatment is underway after several weeks. The danger being that steroids can mask the effects of AK, and once reduced or stopped there can be a chance of serious relapse. – Due to the time taken during the scrapes, contact lenses case checks etc I was sent to VU Amsterdam to get a confocal scanner to confirm it was indeed Acanthamoeba Keratitis, a parasite that is found in water, particularly whilst wearing contact lenses.
Once I was diagnosed with Acanthamoeba Keratitis, I started a very aggressive treatment of eyes drops (Chlorhexidine & Brolene) every hour 24/7 for three days … and then 18/7 for the following days. It became harder and harder, the pain was unbearable, no pain killers were working; they were times I just wanted to pull out my eye due to the pain.
I am a mother of two young children, aged two and six years old so it was heart-breaking to experience. I was not able to be there for them. I just wanted to hide, cry and stay in my dark room.
On 27 March 2017 I had another eye appointment .. and I was at my lowest, mentally and physically … wearing extremely dark sunglasses (letting only 4% of the light in), big hat to block light … still I was in unbearable pain (the ‘eating-pain’) I couldn’t deal with any form of light. While waiting for my turn at the waiting room of the doctor, the nurses turned off the lights as they could see I could not cope. As I went into the doctor’s office, she saw I was a ghost of
the person I used to be and after checking my eye she made the decision.
Four weeks from the very first sign, 28 March 2017 I ended having an emergency therapeutic cornea transplant in order to try to remove as much of the AK as possible and to stop me going blind and possibly losing my eye. The AK was penetrating deeper into the layers of the cornea.
Immediately after receiving the emergency transplant, the ‘eating pain’ was gone!
It was “amazing” to wake up wake up after the transplant and not have the devastating ‘eating pain’ of AK Acanthamoeba; I was in heaven! I couldn’t believe that there was life without that eating-pain.
Of course I have and still have a long road of recovery but I am grateful to the donor, the doctors, the staff, my family and friends, and the amazing Support Groups on Facebook for all the support and strength they have given me and is still ongoing throughout this process.
Is now 3 years since the first sign and my transplant is still in place with four stitches remaining (out of 21). Since the transplant I went on to develop trigeminal neuralgia pain, the development of a cataract (due to excessive amounts of drops), the high astigmatism (due to the shape of the cornea) and the strabismus / double vision … (needed extra surgery) all that for me is a good price to pay for not having the eating pain … of course, if I knew before all of this not to allow my contacts to be in contact with water the story would have been different. Last but not least, my main mission is to bring awareness to as many people as possible. Never mix contact lenses and water
Juliette Vila Sinclair-Spence