I now realise that I came to the party quite late. I’d gone through life not even thinking about my eyes, when WHAM! I hit 50 and fell into the menopausal black hole. I thankfully got off pretty lightly in comparison to many women, but I had one unpleasant and all encompassing side effect that I feel will be with me to the my last day on earth. Dry Eyes.

“But it’s only dry eyes”…. ”Use the drops and they’ll be fine” ….”They’re not that bad. See you again in 2 months” which translated into 2 years.

I’m sure many of you have heard similar phrases and feel you’ve been ‘fobbed off’ just as I have even by Ophthalmic Consultants. It felt like it was only me that was struggling with my dry eyes and I’d resigned myself to just getting on with it, when my friend Ruth forwarded me a Facebook post from Aston Vision Sciences Dept looking for participants for a Dry Eye Research Study. I thought ‘what have I got to lose?’ and possibly a lot to gain, so I made contact, and that decision was one of the best ones I’ve made in my life.  So far I’ve completed 3 dry eye research studies at Aston University and just enrolled for my 4^th.  Even if it didn’t particularly help me, if others could benefit further down the line then I was all for it.

 

First Appointment : “What have I let myself in for?”

My initial contact email was with Sònia who clearly understood and recognised how debilitating constant dry eyes can be, and what a breath of fresh air it felt and a huge relief that finally someone took it seriously.

I read all the information that she sent (comprehensive but not too much to put anyone off) and I was potentially a study participant. From my first visit to the Vision Sciences Building and being greeted by lovely receptionist Joanne with a smile and “Hello can I help you?”, I had a 100% positive experience at every appointment, and I’m usually hard to please.

I felt immediately welcomed by Sònia who was professional, considerate, supportive and very knowledgeable throughout every appointment. The 1^st focussed on lots of different eye examinations to check my eligibility for the study and the base line for follow ups, and these were thorough and completely painless. Everything was explained in easy to understand terms and she made sure I was happy with everything before gaining my informed consent. I also came away knowing so much more about eyes, especially my own.

My 1^st Dry Eye Study: “Unforeseen benefits”

An unexpected plus was that I got fitter! As I went to appointments on the train, I walked around 15000 steps each visit! The only way for me to describe this study was that it involved the use of ‘contact lenses’ containing either a treatment or placebo but being a ‘blind trial’ neither I nor Sònia knew at the time which I was having. I’d never used contact lenses before and I’d say I tolerated rather than embraced them, but I was determined to get to the end of the study.  Sònia was amazingly supportive and always responded to any emails very quickly and reiterated that even at weekends, I could come in and see her if necessary. At each visit I had a range of eye examinations done, and I was out within an hour.

At the end of the study I felt there had been some improvement and my eyes felt less dry, although this didn’t last very long. Still, nothing ventured, nothing gained, and I was happy that I’d been able to add to the study’s findings. I actually felt quite sad when it finally came to an end, as I’d miss my day trips to Birmingham and would have to find another way to keep my step count up. However it didn’t take long to realise that I’d been bitten by the dry eye research bug!

Further Studies: “In for a penny, in for a pound!”

Some months later I jumped at the chance when invited to participate in a follow on study, which again involved ‘contact lens’ treatments. Attending appointments wasn’t onerous and I easily fitted them around work days and other commitments. Sònia was again very supportive and encouraging, and the outcome for me was that again I felt some improvement with my eyes not feeling quite so dry, which was also borne out by the final eye examinations.

3^rd Dry Eye Study: “This has become a habit now!”

A different type of treatment was used in this study run by Jeremy, involving light-based therapy. Same procedures as before where all the information was explained, consent gained and a raft of eye examinations conducted to check my eligibility to take part in the study and to get a base line before the treatment is delivered. This is my favourite treatment so far! It included wearing a type of headset that fitted over my eyes, a light and warmth 😎. It felt more like a relaxing Spa treatment and I was quite disappointed when it was removed after 15 minutes. I was so relaxed that I wanted to stay there for longer! I did notice a difference in my eyes especially after the first treatment, and I had a good couple of hours where I didn’t need to put in any of my eye drops. That was an amazing feeling. My eyes showed some improvement at the end of the study, but perhaps not as much as I’d personally hoped for. However I was so glad to have been a part of this and again contributed to the research.

I’ve now just enrolled for my 4^th study, again involving light therapy. Told you I’ve got the bug! This time I get to have 30 minutes of light therapy, so I’m looking forward to being back in the Vision Sciences Tropical Spa 🏝️ relaxing.

What’s the Commitment?

Each study included around 6 appointments over a number of weeks/months and lasting usually 30 – 60 minutes each session. Some of these research studies gained supportive funding which meant that participants were able to claim a set amount of money after attending the last appointment. The payment wouldn’t fund a luxury holiday by any means, but it was enough to cover my travel costs.

My Final Thoughts…..

I’ve come to realise that staff are “banging the Dry Eye Syndrome drum” as loud as they can in order for eye specialists, professionals, patients and public to be better educated and informed, and trying hard to bring this more into the focus of healthcare. It’s my personal experience and probably the same for many of you too reading this, that I and my dry eyes have been ignored, considered unimportant, are a mere inconvenience and am wasting the time of health professionals in GP practice, hospitals and in eye clinics. To the point where I will try anything I can to try to improve my dry eyes, which is why I applied to be part of these important research studies in the first place. I’m so grateful to my lovely friend Ruth (without her none of this would have happened) and who remembered me frequently moaning about my dry eyes over the years, and so kick started my enlightening journey into being a part of a dedicated group of people who desperately want to improve the quality of life of anyone who is blighted with dry eye syndrome.  At least that’s how it feels to me being part of this.

I was originally hoping to maybe improve my own dry eyes even a little, but I realised it had become so much more when I finished my first study. I enjoyed my train journeys to Birmingham, drinking the best coffee in a lovely little café I found tucked away, a mooch around the shops or the Christmas Market, and meeting the enthusiastic, caring and knowledgeable staff. Knowing I’m also contributing to who knows what fantastic treatments may be available in the future as a result is a good feeling.  This experience has been so well worth it. You may even sign up yourself and get as much out of the experience as I have. Go for it!