- Acanthamoeba keratitis
- Interviews
SJ's interview
How did all start?
I had some biologic injections for asthma called dupulumab, and developed a very painful eye 10 days after the injections. It was initially diagnosed as an erosion, but the pain and terrible light sensitivity worsened for another month until I lost my vision. I was lucky to see a brilliant consultant who diagnosed acanthamoeba keratitis and started me on appropriate treatments. Prior to this I had copious amounts of steroid eye drops for inflammation which can in fact worsen the condition. The consultant diagnosed the condition with a confocal scan which showed active acanthamoeba nd cysts.
Do you already have a diagnosis? How long did it take you to get it?
It took a month to diagnose as the pain and light sensitivity was initially thought to be due to an erosion, subsequently to conjunctivitis, and also due to the dupilumab injections which have known ocular side effects.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Opthalmologists at a leading eye hospital. I have received excellent care.
What has been the most useful thing for you so far?
The most useful thing has been continuity of care, access to pain relief, and pain relieving eye drops. Also having a brilliant local eye hospital a@e when my symptoms have worsened.
What have been your biggest difficulties?
The pain and light sensitivity has been the most difficult. I took lots of codeine at first, but I had to sleep so much, which was very difficult as I have children. Just managing day to day things was very difficult at first as the pain was horrendous, and the drops were excruciating to put in, sometimes hourly in the beginning.
How has your social and family environment reacted? Have your social or family relationships changed?
My family have been very supportive. I had to give up university temporarily, which was very stressful.
What things have you stopped doing?
I don't go out as much as I have hit my head a few times, I find it difficult to judge where things are as I have lost the sight in my left eye. I feel quite vulnerable in crowds. I have stopped my online craft business as I can't see well enough, and had to temporarily give up university due to pain and poor vision..
What do you think about the future?
I hope eventually this parasite will be gone, though I know it will be a long process
First to eradicate the acanthamoeba, and then to hopefully restore sight.
So far, which years have been the best years in your life? What have you done during them?
Obtaining my nursing qualification, and working as a nurse for 20 years. Recently starting my masters in health psychology was also really enjoyable. Having my children has been the happiest of all.
What would you like to do if you didn’t have your condition?
I would like to be able to read easily, and enjoy the sunshine instead of having to wear dark glasses and hide away when it's bright. I would like to go out without having to shield my eyes, and would also like to look how I used to. My eye looks quite bad, and I feel quite self conscious.
If you had to describe your life in a sentence, what would it be?
Hopeful for better days, but trying to make the most of the good things.
Finally, what advice would you give to a person in a similar situation?
That things will eventually get better and the awful dark time at the beginning will gradually fade away as the condition becomes more stable. I would advise to keep your eyes shaded as much as possible, and take painkillers if necessary. It was the only thing that got me through in the beginning.
