Issue 8

- INTRODUCTION -

Welcome back to your monthly newsletter magazine, dedicated and produced for OOKP patients. Please consider this YOUR magazine, written for you, on topics you choose and directed by your feedback. We want to fill its pages, with all the information you wish to know regarding your OOKP journey.

This is only achievable with your input and feedback. So, please contact us giving suggestions for articles and content you wish to be included. Also, please give feedback of how we can make this newsletter better.

If you like our goals, why not become a volunteer and help us research, write and produce the magazine!

If interested, email us at

ourookpservice@gmail.com

This is our new, dedicated email address, so please enter “Newsletter” in the subject line.

Or visit our website below and click “CONTACT US”

www.ookpsupport.org

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- TABLE OF CONTENTS -

* Introduction

* Editors Update

* Pre-OOKP Surgery

* Managing Emotions & Doubts

* Post – OOKP Surgery

* Business Opportunity

* Support Group Mission

* Technology News

* Wellness Corner

* Community Corner – Your Stories

* Upcoming Events & Resources

* Closing Thoughts

* Contributors Praises

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EDITORS UPDATE

Hi Guys.

Welcome to issue 8 of the OOKP newsletter, VISIONARY HORIZONS.

I think I must be losing it a little. (No. You can disagree) as I said I’d be back this month, but, I’m on holidays. Sorry. Will you accept my apologies again for this short editors update. I promise, I’ll be back to normal (well, as normal as I can be, in April)

As I’m on holiday, Ive included a break in my life story and included a life story from one of our members, Irene Worgan. Hopefully, this will give you a new angle of what the OOKP journey involves for other people.

Thanks to Irene and let’s see more of you giving your stories. Not only is it fascinating to read, it gives other members hope and direction.

So, until I return, take care and speak soon. Now, on with the newsletter.

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PRE-OOKP SURGERY – UNDERSTANDING THE MULTI-DISCIPLINARY TEAM (MDT).

Before undertaking OOKP surgery, many patients hear references to a “team,” but aren’t always told clearly who that team is, or what each person does. Understanding the multidisciplinary team — often called the MDT — can reduce uncertainty and help you feel more confident and supported throughout the process. You can ask your questions to the correct team member and be aware of what answers they require, during your pre-op meetings.

Basically, an MDT is a group of professionals who work together to plan and deliver your care. Each member brings a specific area of expertise, and together they ensure your surgery and recovery are managed safely and thoroughly.

Here are the key roles you may encounter:

• Ophthalmic  Surgeon. This is the specialist responsible for the surgical procedure itself. They assess suitability for OOKP, explain the surgery, and oversee long-term outcomes. This is what is often referred to as “your consultant.”

• Oral and Maxillofacial Surgeon or Dental Specialist. Because OOKP uses oral tissue, this specialist ensures your mouth and teeth are suitable and manages that part of the procedure. Generally, you encounter this consultant first, as this is the initial step of the overall OOKP process.

• Nursing Team. Nurses provide hands-on care before and after surgery. They explain procedures, administer medication, and are often your first point of contact for questions or concerns. These nurses are specifically trained in the OOKP process and every step involved. If you’ve any questions, these nurses are the ones to approach, and if they’re unsure, they have access to someone who can answer your questions.

• Psychologist or Counsellor. Emotional preparation and adjustment are recognised as essential parts of the OOKP journey. Mental health professionals help you process fears, expectations, and recovery challenges. If you have any anxieties, concerns, fears or questions, request the assistance of a psychologist. The better your mental health, the better your physical health, therefore improving your chances of success.

• Rehabilitation and Mobility Specialists. These professionals support independence after surgery, helping you adapt safely to changes in vision and daily life. There’s virtually nothing an OOKP patient can’t achieve, however, we simply achieve it in a different way to our sighted counterparts. Use these specialists to attain the skills necessary to live a fulfilling life.

• Peer Support Service. Although not generally professional medical staff, they’re considered specialists, as having been through the process, they possess insight and knowledge; generally emotional; which the above team don’t have experience of. Ask these people any question you wish, on any subject concerning the entire OOKP journey and you’ll receive invaluable assistance, unavailable from any other service. We’re here to be alongside you as you travel the OOKP journey. Take a look at our website for a multitude of helpful information.

Knowing who does what allows you to direct questions to the right person and feel less overwhelmed. The MDT exists to share responsibility — so you’re not relying on one individual, but on a coordinated team working together for your well-being. Never be afraid to ask, it may just give you the information you’ve been searching for.

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MANAGING EMOTIONS & DOUBTS – COMPARING YOURSELF TO OTHER PATIENTS.

It’s extremely common for OOKP patients to compare themselves to others on the same journey. You may hear about someone recovering faster, feeling more confident, or reaching milestones sooner, and begin to wonder if you’re “behind.” It’s important to understand, your progress is specific to you. When you’re ready; and have the appropriate skills and knowledge; you’ll achieve progress.

Comparison can quietly undermine confidence if left unchecked. Here are ways to manage it, to ensure your experience is positive:

• Every Journey Is Unique. No two bodies, minds, or circumstances are the same. Therefore, differences in recovery are expected, and not concerning. Concentrate on you, not others.

• Visible Progress Isn’t the Full Story. When meeting other OOKP patients, you may only see a small part of someone else’s experience. Remember, private struggles are rarely visible. We all need help of some kind, so never be afraid to ask. Obtaining an answer to a question, may just be your inspiration.

• Shift from Comparison to Learning. Instead of asking “Why is it not me?”, ask “What can I learn from this?” Use others’ experiences as information and inspiration to learn and develop, not as judgment; which only results in bitterness, animosity and regret..

• Measure Progress Against Yourself, Not Others. Reflect on where you were weeks or months ago. Growth is best measured inwardly, not externally. Growth is also only meaningful when it is your progress, not others. You don’t know their circumstances, so their progress is; in the nicest way possible; irrelevant.

• Talk About It. Feelings of comparison often lose their power when spoken aloud to peers or counsellors who understand. Remember, our OOKP support service can help, because we’ve been their, so ask us. You’ll find, many of our members say, it was only when they stopped comparing their progress to others, they realised their true progress. Once you discover this, you become more positive, more realistic and more accepting of your achievements.

It’s important to realise, your pace is not a failure — it’s simply yours. Respecting your own timeline allows confidence to grow naturally rather than being pushed to breaking point, or eroded by unfair comparisons. To progress, you need knowledge and understanding. You may only have just obtained the skills others have had for a number of weeks, so comparing yourself to others is not a true reflection. Only comparing your progress to where you were weeks or months ago, will give a true reflection of how far you’ve come. Only by asking your peers to impart their skills and knowledge, will you develop your ability to progress

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POST-OOKP SURGERY- MANAGING EXPECTATIONS DURING RECOVERY.

After surgery, many patients expect recovery to follow a clear, accelerated, upward path. In reality, healing often moves in waves — progress, pause, progress again. This is the bodies way of becoming familiar with the circumstances, so it can achieve more in the upcoming recovery phases. Understanding this pattern can prevent unnecessary worry or disappointment.

Here’s what realistic recovery often looks like:

• Good Days and Difficult Days. Feeling better one day and more tired or uncomfortable the next is normal. Fluctuation does not mean regression. It’s simply the body becoming familiar with changes.

• Physical and Emotional Healing Run Together. Emotional dips often coincide with physical fatigue. Treat both with equal care. It’s important to understand, mental health leads to physical health and vice versa, so adopt techniques to help heal both entities.

• Milestones Are Individual. Some improvements happen quickly, others slowly. Healing can’t be rushed. Always set achievable milestones, to ensure you remain positive. It’s better to dissect goals into 3, 4, 5, or more simple and achievable steps, than just 1. Also, give yourself a small reward after each accomplished step and a large reward after each accomplished goal. Remember, reward encourages progress and achievable steps encourage determination.

• Patience Protects Wellbeing. Expecting too much too soon can lead to frustration and the possibility of damage. Allowing recovery to unfold naturally reduces stress. Allowing your body to tell you when to rest or progress, ensures maximum healing in the minimum of time.

• Support Remains Important. Even when outward recovery looks good, continued support helps maintain progress and confidence. Don’t try doing everything yourself, rely on others to give assistance. They may have tips and tricks to aid your recovery.

Managing expectations isn’t about lowering hope — it’s about aligning hope with reality. When expectations are realistic, recovery feels steadier and more empowering. This increases positive mental attitude, so encouraging progress

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- BUSINESS OPPORTUNITY -

If you wish to learn a new vocation, I offer a course, teaching individuals how to become a “Blind Awareness Trainer,” where you train front-line staff, to correctly assist blind and visually impaired customers.

This is my vocation, where earnings are considerable, it provides fun and interesting social opportunities and I increase the number of people who can offer assistance to visually impaired individuals.

If you’re interested, send an email with “TRAINING” in the subject line, for more details

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- THE SUPPORT GROUP MISSION -

Our mission, is to empower people facing OOKP (“tooth‐in‐eye”) surgery and their families, by providing clear and accessible information, practical help and a caring community. We exist, to relieve the stress and isolation of this rare procedure, by advancing patients’ health and well‐being, through education and support. In practice, we aim to give everyone affected by OOKP, the knowledge, tools and emotional support they need to feel informed and confident about their care. This means offering up‑to‑date guidance on the emotions of surgery and follow‑up support, building peer networks to share experiences, involving families in the process, and partnering with eye clinics and charities, to deliver the best possible outcomes. This can only be achieved with YOUR help!

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TECHNOLOGY NEWS – SAFE USE OF TECHNOLOGY WHEN VISION CHANGES.

As your vision changes during recovery, technology can feel both helpful and challenging. Be aware, settings which previously worked well, may need adjusting, and unfamiliar interfaces can become frustrating if not approached carefully.

Concentrate on one item at a time. Members suggest making change to the one piece of equipment used most. Once familiar with the adjustments made to this item and you’re conversant with its operation, only then should you continue to the next item to change. This ensures you remain active, without causing frustration and confusion.

Here’s some principles for using technology safely and comfortably during periods of change:

• Adjust Gradually. Avoid making many changes at once. Adjust one setting, use it for a few days, then decide if it works for you. If not, revert to the previous setting and make an alternative change. This ensures you gain the maximum effectiveness from your technology.

• Use Audio First. Prioritise spoken feedback over visual cues. Audio reduces strain and allows you to rest your eyes. There may be a slight learning curve understanding spoken feedback, but this will save hours of time in the future.

• Avoid Overuse. Long periods of screen time, even with accessibility tools, can increase fatigue. Build in regular breaks. It allows for thinking time, reduces frustration and allows you to indulge in other physical activities, necessary for a healthy life style.

• Back-Up Important Information. Store contacts, reminders, and notes in more than one place to avoid stress if something goes wrong. Even saving a document after making several changes can be critical. Members are familiar with creating a complex letter for example, then on the final paragraph, a problem with a computer occurs and because the letter is not saved, all your hard work is lost. The back up suggestion is essential and comes from experience.

• Ask for Help Without Hesitation. Technology support isn’t a sign of inability. It’s a practical step toward independence. Using other members tips and tricks; gained from experience; may be the answer you’ve been searching for.

Technology should support recovery, not complicate it. Using it thoughtfully ensures it remains a helpful tool rather than an added source of stress. For more help with what’s available and how to use it, visit the tech section of the tutorial videos category on our website.

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WELLNESS CORNER – BUILDING CONFIDENCE THROUGH SMALL WINS.

It’s essential to understand, confidence isn’t restored all at once. It’s rebuilt quietly, through small, repeated successes that accumulate over time. Recognising and valuing these “small wins” is essential for emotional recovery and development.

Examples of small wins include:

• Successfully completing a daily task independently

• Making a phone call you’ve been avoiding

• Attending an appointment without heightened anxiety

• Trying a new tool or routine and finding it helpful

• Speaking openly about how you’re feeling

Here’s how to use small wins to strengthen confidence:

• Notice Them Intentionally. At the end of each day, identify one thing that went well, no matter how small. Make a note, then use it again in the future.

• Name the Effort, Not Just the Outcome. Courage and persistence matter as much as results. Recognise and make a note of what emotions or feelings were used to achieve a task, so they can be used or avoided in the future.

• Build Graduall. Small wins create momentum. Confidence grows through consistency, not leaps. By rewarding each small win, you encourage the mind to continue developing such actions.

• Share Successes. Sharing achievements with peers reinforces them and inspires others. It also gives you a sense of achievement, knowing you’ve helped others. This is the mission of our OOKP support service.

Confidence isn’t something you wait for — it’s something you build, step by step. Every small win is evidence that you’re adapting, coping, and moving forward. By making notes of each achievement, you can refer to them in times of doubt and use them for inspiration when struggling to complete future tasks. It costs nothing, but gives fantastic results. Go on, try it and see how empowering it is.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

As I'm away for much of this month, it’s difficult for me to continue with my story, so I thought it would be nice to have a break and take a look at another members story.

Here’s the account of Irene Worgans story, in her own words, regarding her OOKP journey. Well done Irene, this is a very interesting story.

Hi everyone my name is Irene and this is my OOKP story,

I was born in Cardiff a little after the end of the 2nd World War (the dark ages when you think how much has changed). I was an only child, as my mother was advised not to have more children due to health difficulties during pregnancy. Things were fine until at 5years old I was given Phenobarbitone after concussion caused by a fall, the dreaded Stevens Johnson Syndrme took hold.

I don’t remember much about my stay in hospital but I do remember being covered with gentian violet, and wearing little waistcoats made from gamgee. The ladies in the medical ward above the children’s ward made the little garments from the rolls of gauge covered cotton wool.

Years later, whilst doing my nurse training, I would work on both these wards! I think my brain has shut down a lot of memories from this time, but I know my mother had a very difficult time taking me from one specialist to another and I even spent time in some sort of convalescence home in Kent! While I was there I’m told that I wrote letters to my parents, that looked like code or something, but if you sounded out each letter, they made sense. I’m not good at spelling even today but thank goodness for spell checkers on the PC!

Thankfully my general health improved and I returned to school and enjoyed a normal childhood, apart from flare-ups of inflammation and infections in my eyes. I just scraped through my eleven plus examinations but was able to sit “O” level GCE exams. By then I knew that I wanted to be a nurse, so it was very important that I got good grades to prove that I could study and my eye problems would not stop me working.

My sight was fine in my best eye at this time, but gradually over the years, my cornea became scarred and ulcerated. During the early 70s, I was referred to Moorefields under the wonderful care of Mr Dart. This was a difficult and often painful time and I even became clinically depressed at one point; and my marriage broke down, with myself and my young son going back to live with my mother. I must say that my husband did nothing wrong, things just got too much for me.

After many corneal ulcers, my left cornea perforated and I received the first of a number of corneal grafts. Some lasted longer than others, but eventually, I was advised to have the eye covered with a skin graft, in the hope that “if the pressure does not cause problems, I would have an eye ready for science to come up with an answer” and eventually it did!

We saw the OOKP procedure on a TV program called Tomorrow’s World, and during my next check up, I mentioned it to Mr Dart, who replied that he was going to ask me if I would like to be referred to Professor Liu, to see if I would be a suitable patient. I said “yes.” I was suitable and was put on the waiting list.

About a year past and I thought long and hard about the operation during that time. I had married again and had two more sons. I had just had guide dog number 3, and I was mobile, busy and useful. What if it didn’t work? All the trauma would be for nothing. I am a Christian and many years ago I was prayed over at a healing service for my sight to be restored, but I felt God was saying, “in the fullness of time,” which I took to mean in heaven.

My Braille was not very good (like you Martin!) But I pulled out my Braille copy of St John’s gospel and opened it randomly. I managed to work out which story I’d come across and got my good friend to read it to me. The story was about Jesus healing a blind man and He sends the man away to wash the mud paste from his eyes and he could see when he does. I know this wouldn’t work for everyone but it did for me and I felt that I must give the operation a try.

I had the first part of the procedure in March 1999, and the second part in June. I’ll never forget the moment when Professor Liu took down the dressing for the first time and started to clean my eye, I realised that I could see his watch, he asked me if I could see the time, which I could! I don’t know who was the happiest; him or me! It took a while to get used to this wonderful gift of sight, I still have problems with scanning down and to the right when I’m being engrossed with something in the distance, too nosy for my own good. It also took me ages to realise that I didn’t have to go into a room to look for something when I could see it from the doorway!

I’ve had a few hiccups over the years such as a detached retina a few years after the OOKP operation, and as the original graft was thinning I needed to have a new OOKP procedure in 2011. After a problem with the tooth and optic cylinder not sticking the second operation was as successful as the first. I can read very small

print with the help of reading glasses, enjoy films and TV and am able to travel independently; reading signs and notice etc, but the thing that gave me so much pleasure was being able to see people returning my smile! I was able to get a job in social care which I loved and worked part time until I was 70. I have also had great joy helping with my 4 grandsons. (We don’t seem to do girls in my family)

Now we are back in Moorfields, full circle, and it has been a joy to meet Mr Perez, and all the brilliant people who give such great care and kindness when I visit for a check up. I will be eternally grateful to Professor Liu for giving me 25years of near normal sight. Also all the people who help me in so many different ways at Brighton over the years. I hope my story will be of help and be of interest to other people considering having an OOKP procedure.

A little different to my story, and it highlights how the loss of sight was so much different in Irenes era. Well done Irene.

It would be nice to hear from other members, giving an account of their sight loss journey. In the meantime, I will be back next month with the continuation of my story. I hope this interlude has been of interest to you.

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- UPCOMING EVENTS & RESOURCES -

As we develop the support service, website, newsletter magazine and WhatsApp group, we want to produce podcasts, webinars, workshops, fundraising events and other accessible materials members can access.

If you have news to share, please let us know by email, and we’ll advertise it here, for all to access and join. The more we can inform people, the more this service will grow. Lets make it a service to be respected, one which others aim to imitate for their group.

Keep communicating with us and others, it’s the only way we learn and progress, to make life easier.

So come on all you budding bakers, crafters and sales gurus, lets get some events planned to raise money. Maybe, we can raise enough money to have a Christmas trip to London, to see a show, after we ‘ve discussed our progress.

“Sound good? Only we can make it happen”

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CLOSING THOUGHTS: EMBRACE YOUR VISIONARY HORIZONS

Again, apologies for the short editorials, but running round the world, doesn’t leave me much time to work.

I’ll tell you all about it when I return. If we can begin thinking about becoming an officer, so we can get charity status and get more funding this would be great.

So, see you on my return.

Take care and speak soon.

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Website

www.ookpsupport.org

Phone

07483 880268

E-Mail

This is our new, dedicated email address.

ourookpservice@gmail.com

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CONTRIBUTORS PRAISES

A big thank you to the following, for helping to produce this monthly newsletter and assisting with the services.

Martin Jones, Rotherham, Editor

Caroline Williams, Newcastle, Communications Officer