Acanthamoeba Keratitis Info was born after Juliette Vila Sinclair-Spence’s life changed end February 2017 … after more than 40 years wearing contact lenses; sadly she had to experience AK Acanthamoeba Keratitis to learn the hard way that whenever she was wearing her contact lenses she must never let them be in contact with water.
During that process she met two amazing women who also have also gone through the AK journey: Claire Wilkinson, a very strong woman whom thanks to her the Acanthamoeba Support Group was created and till today is the main point of information and support for all AK Warriors; and Liz Crane, a very caring woman, who daily supports Juliette and many others through their journey making a huge difference. As from that day Juliette made her mission to bring awareness.
The site is being put together by ex-patients of Acanthamoeba Keratitis, not medically trained in any way. Still work in progress and the aim is to have it in multilingual. Because we went through AK and we missed information, we want to bring awareness and helps others going through it.
Our aim is to work together with contact manufacturers, optometrist, opticians, ophthalmologist, Cornea specialist , students, researchers, patients and their support group .
Remember no matter where you live, how old you are or what kind of contact lenses you wear, AK (Acanthamoeba Keratitis) can get in your eye! so please do not assume it will not be you. You really don’t want to experience it.
Juliette Vila Sinclair Spence
Born in Venezuela, living in The Netherlands and mother of two amazing kids. She contracted AK end February 2017 . Within 2 weeks she started the AK treatment but it was so aggressive that within 4 weeks since the first sign of AK she ended having an emergency cornea transplant to save her eye and sight. She has been left with an aftermath of nerve damage (Trigeminal neuralgia) apart from high astigmatism (due to the shape of new cornea). Nonetheless she feels grateful for having been treated so quick and having had the transplant. Her purpose in life has become bringing awareness of the dangers of mixing contact lenses with water, therefore she decided to create a patient driven information website for patients, doctors, contact lens wearers, - They all need to work together in other to make a bigger impact.
A mum of two beautiful children from Australia. She was correctly diagnosed with AK early February 2008. AK for herself has been an extremely uphill battle that has left her with with an aftermath of issues. She had a relapse at 9 months, had a corneal transplant in October 2009 that sadly was unsuccessful and I have never gained sight, and sever nerve damage which the neurologist diagnosed her with Trigeminal neuralgia. She is left with pain but she refuses to give up the fight. So her aim in life is to support those fighting AK, offer support to family member's so they can understand AK, and fight for better awareness both in the community and within the Medical field.
She is from England. She contracted AK in June 2012 (approx). Had a corneal transplant in September 2013. Was blind for another year and had cataract removed 2014. In 2015 had a new lense put in the non AK eye and cataract removed. It is now 2019 and she still have a few stitches in place, others have come loose and been removed over time, since transplant she have had a slight infection and also has blepharitis, but other than that she is blessed with good sight (wearing prescription spectacles for reading). If she can prevent people from contracting AK , then her mission is accomplished, plus she tries to support people who have AK to help them through the terrible journey and let them know they are not alone. During her AK journey she has made some wonderful friends along the way.
Almost ten years ago, Irenie’s life changed in a single weekend after she put in her contact lenses as normal one Saturday, and within three days she was in terrible pain and couldn’t see out of her right eye. Since then she’s had intensive treatment for Acanthamoeba Keratitis, the contact lens-related infection that she caught as a result. She is now blind in one eye. Whilst having treatment, she started a campaign to raise awareness of the biggest risk factor for the disease; water exposure whilst wearing contact lenses. Through her efforts, Irenie has persuaded industry bodies to include ‘no water’ warnings on contact lens packaging in the UK, US and Australia; changed the language and information provided with lenses by optometrists and contact lens practitioners; set up a thriving support group for fellow patients and carers; and co-authored journal articles and scientific papers on the risk factors for the disease. Her efforts have led to a number of awards; in 2015 she was awarded SMK Health and Social Care Campaigner of the Year for this work, and in 2016 she won Campaign of the Year at the RNIB Vision Pioneer Awards. She has also been recognised as one of 50 HSJ Patient Leaders making impact in the NHS. Irenie is passionate about offering people opportunities to participate in the design, development and delivery of health services having first hand experience of the unique impact patients can have. She now runs a consultancy called New Citizenship Project working with organisations to create opportunities for people to participate. She lives in London with her husband and young son.
DISCLAIMER: The site is put together by ex-patients of AK, not medically trained in any way. We hope you will find this information helpful but please if in any doubt ALWAYS seek advice/treatment from an ophthalmologist/corneal specialist