World Glaucoma Week 2018

Last week (11th-17th March) marked World Glaucoma Week, an international effort aimed at raising awareness of the disease and encouraging everyone, especially those who are most at risk, to get regular eye tests.

Glaucoma is the name given to a group of eye diseases that affect the optic nerve, and it can cause the patient to lose their sight completely if it remains untreated.  It is estimated that glaucoma has claimed the sight of 4.5 million people globally, and that this figure is due to rise to 11.2 million by 2020.

Most people with glaucoma are unlikely to realise they have the disease until it is at its advanced stages.  There is currently no cure for glaucoma and any sight loss that occurs as a result of the condition is irreversible.  However, treatment for the disease does exist, and once the patient has been diagnosed it is possible for them to take action to limit their sight loss.  This is why regular eye checks with an eye-care professional are vital so that the disease is caught in the early stages and treatment can begin as soon as possible.

There are various risk factors that make a person more likely to experience glaucoma, including advanced age, black African or Caribbean ancestry, and a family history of the disease.  This year, World Glaucoma Week was focusing specifically on targeting people who are first-degree relatives (parents, children or siblings) of people with glaucoma to encourage them to get their eyes tested regularly.  First-degree relatives have a ten-fold increase in life-long glaucoma risk, so it is extremely important that those who know they have a close relative with the disease get their eyes checked, and it is also important for people with glaucoma to inform their relatives, where they are comfortable doing so, and to encourage them to have their eyes tested.

World Glaucoma Week has been promoting this issue across the globe, with public talks, radio shows, social media campaigns and much more in countries from Brazil to Nigeria to Indonesia.  Closer to home, Specsavers trained over 2,000 staff about glaucoma in advance of World Glaucoma Week, and the International Glaucoma Association worked with Vision Express to raise awareness of the condition through supporting the Vision Van which toured the UK.  The NHS also produced a free glaucoma guide with information about the condition and tips suggesting how people with glaucoma can manage it.  The guide can be found here:

For more information about glaucoma and to see what else went on during World Glaucoma Week, you can access their website here:

Image shows an elderly man getting his eyes tested and the words “Green = Go get your eyes tested Glaucoma Save Your Sight!”.

Written by Nicola Stokes


What It’s Like to be a Blind Mum

Growing up I enjoyed looking after my younger siblings and cousins, so I knew I wanted children of my own one day.  However, when I was 17 years old I was diagnosed with retinitis pigmentosa and told that I would lose my sight in the matter of weeks, months or years.

I stopped dreaming about having my own family again until I met my future husband at the age of 21.  Soon after I got married I was blessed with my first beautiful daughter.  This was also when I noticed that my eyesight was deteriorating for the first time since my RP diagnosis.  Because of this, I became a very hands-on mother.   I needed to feel things as I couldn’t rely on my eyes to see.  Moreover, when my daughter started to walk I had to find ways to be able to locate her.  I’d dress her in brightly coloured clothes and shoes that squeaked.

Four years later I was blessed once more with my second beautiful daughter, and unfortunately found that my sight was deteriorating further.  My eldest daughter was a big help in being my eyes. For example, she would read to her baby sister, which was something I could no longer do.  Being a VI mum of two girls was challenging at first, but I taught my daughters to be aware of my sight loss, and they have good knowledge of my eye conditions and mobility aids like the white cane.  I feel confident to rely on my daughters to guide me and give me verbal cues when I’m out in public or at home.  I’m very proud of them both.

Finally, I’d like to say to all VI mum out there that you are doing an incredible job.  Keep on being the great mum that you are!  If you’re vision impaired and thinking about starting a family with your partner it’s natural to have lots of questions.  A genetics counsellor would be your first point of call if you’re worried about passing on your condition.  I would also speak to other visually impaired parents.  There are plenty of blind parent’s forums online to ask questions and seek advice and information.

What can I say?  Being a mum is an amazing experience and I love being a mum to both my wonderful and perfect daughters.

Image of Bhavini in a bright red dress with her daughters.

Written by Bhavini Makwana

Edited by Ray Calamaan

Joanna Lally’s Big Half Marathon Success

The Beast from the East certainly had us all on weather watch throughout last week. However, Saturday (3rd March) arrived and the snow melted away and you wouldn’t have even known we’d had any of the white stuff in London! With the weather looking more promising it was confirmed that the very first Vitality Big Half Marathon would go ahead on Sunday 4th March.

Masuma Snowman for Blog Article
Photo of a snowman wearing a hat and scarf made by Masuma Ali during the week The Beast of the East brought snow chaos to the UK.

Wrapped up in my many layers I joined Team ELVis at our spectator spot by Bermondsey Station, which was mile 8 for the runners, to cheer on our amazing Big Half runner Joanna Lally. Over 11,000 runners lined up by Tower Bridge for the start of the race and finished at the iconic Cutty Sark in Greenwich.

We had the honour of seeing the four-time British Olympic champion Sir Mo Farah run past us before streams of other runners started to arrive. It was fantastic seeing Joanna at mile 8, who was in very good spirits. She has done an excellent job in raising over £600 for us to be able to continue running more technology group sessions to blind and partially sighted people. There is still time to donate and help Joanna to reach her target of £1000. You can donate on

We arrived at Greenwich Park to meet our runner Joanna as well as Jessica Beal who ran for South East London Vision, our sister charity covering the 6 boroughs south of the River Thames. Greenwich Park was a burst of energy with the Big Festival in full swing with live music and plenty of food stalls. Both Jessica and Joanna were thrilled at their achievements and rightly so as it was both their first half marathon. Joanna finished in 2 hours, 26 minutes and 30 seconds and Jessica in 2 hours, 24 minutes and 56 seconds.

Many congratulations to both ladies, you’ve done yourself and all of us proud!

Photo of Joanna Lally smiling and holding up her Big Half Marathon medal.

Written by Masuma Ali

Christine’s Fun-to-Make Fairy Cakes

Here’s another recipe I’d like to share with you.  I hope you enjoy making these fairy cakes because I always have such fun making them with my nieces and nephews, and I must say there is always words about who is going to lick the spoons!

Fairy Cakes

110g Self Raising Flour

110g Caster Sugar

110g Butter or Margarine, softened at room temperature

2 Medium Eggs

1 tsp Vanilla Extract

1-2 tbsp Milk


2-3 tbsp Water

2-3 drops of Food Colouring

300g Icing Sugar

Hundreds and Thousands, or other cake decorations


  1. Preheat the oven to 180C, 350C Fan or Gas 4. Use 2×12 hole fairy cake tins with paper cases.
  1. Cream the butter and sugar together in a bowl. Beat in the eggs a little at a time, and stir in the vanilla extract.
  1. Fold in the flour using a metal spoon. Add a little milk until the mixture is a soft dropping consistency, spoon the mixture into the paper cases until they are about half full.
  1. Bake in the oven for 8-10 minutes, or until golden-brown on top. Set aside to cool for 10 minutes, then remove from the tin
  1. Sift the icing sugar into a large mixing bowl and stir in enough water to create a smooth mixture. Stir in the food colouring
  1. To ice the fairy cakes, drizzle the icing over the cakes, sprinkle with decorations and set aside until the icing hardens.
Fairy Cakes from Flickr.jpg
Photo of four fairy cakes decorated with hundreds and thousands.


Written by Christine Edmead

Did You Know February is Retinitis Pigmentosa Awareness Month?

This February is Retinitis Pigmentosa (RP) Awareness Month.  Retinitis pigmentosa is a genetic eye disease of the retina, and it is estimated that 1 in 4,000 people are affected by the condition.  Because RP is the degeneration of the retina, people living with the condition gradually lose their sight, which can take weeks, months, or years.  Can you imagine what it’s like for someone living with RP to know that one day their sight will completely disappear?

RP takes way an individual’s confidence and independence.  Even in their own home they may fear that they will injure themselves very badly by falling over or walking in to a wall.  Symptoms of RP include affected night vision and difficulty seeing peripheral vision.

Living with RP can affect your emotional wellbeing.  Currently, there is no treatment, and any developments are in the early stages.  ELVis Activities Coordinator, Bhavini Makwana has written a detailed blog entry about her RP diagnosis.  From feeling isolated to coming to terms with her sight loss as a new mother, it’s an inspiring story!  Read Bhavini’s blog entry here:

Just before the New Year, I attended an RP Patient Information Day in central London with Bhavini.  She stood in front of an audience to give a talk about how she has adapted to living with her condition and reassure others it’s not the ‘end of the world’ when you have sight loss.  My favourite part of her talk was when she said, “You don’t need to have sight to have vision, so go out and find your vision and be the best you can!” I remember it very clearly because it’s a really encouraging quote.

At ELVis, several of the members have RP.  One member living in Tower Hamlets describes how he has adjusted to his night blindness.  He says, “I am able to travel in the evening because I use my white cane and I utilise sighted assistance on public transport.  It is helpful and reassuring to have someone there to guide me.” Furthermore, he reveals how technology has helped him to ‘see’.  “I use apps on my phone to tell me the colour of my clothes, and I have a talking thermostat to tell me the temperature of the food when I cook.”

As I mentioned earlier, receiving an RP diagnose can be a stressful time so having a support network is very important.  ELVis members living with RP are able to meet each other at our social group outings and events to share stories, receive peer support and gain confidence to remain independent.  Find out about our upcoming events on our website!

Photo showing a RP simulation of night blindness.

Written by Ray Calamaan

My Top 3 Amazon Echo Skills

There has been great interest in the Amazon Echo since it has been launched and the Echo can do many things out of the box when it is set up such as set timers and alarms and play radio stations.  It is also possible to extend the functionality of the Amazon Echo by enabling its skills.  There are thousands of these, but many are experimental so I thought I’d suggest a few that are really useful.  Here are 3 skills that I have found useful or entertaining.

‘My Talking Newspaper’ skill.  This is a skill that lets you listen to local talking newspapers that are available in the UK. It also lets you listen to the Infosound magazine, the Dot to Dot podcast which has hundreds of reviews of skills and RNIB Connect radio.  To enable it say “Alexa, enable My Talking Newspaper skill” after this to use the skill say “Alexa, open My Talking Newspaper”.

‘The Daily Log’ skill allows you to make notes with your voice.  You just speak the note such as “Here is John Smith’s phone number. It’s 02073331333”.  You can then use your voice to search for John Smith once the skill is open by saying “Search for John Smith”.  You can search for recordings on a particular day or for particular words.  This is a powerful skill, particularly for recording notes longer than a sentence or so.  To enable it say “Alexa, enable Daily Log Skill” then to use it after that say “Alexa, open Daily Log”.

The third skill I want to highlight is called ‘Path of Discovery: Europa’.  It’s an interactive Sci-Fi game.  This skill demonstrates great use of sound effects to enrich the experience of using the Amazon Echo.  The tasks are not too hard and there is plenty of help through the game. So even if Sci-Fi is not your thing, this skill is worth giving a go just for fun!  Like all the skills mentioned here, it’s free so there’s nothing to lose.  To enable it say “Alexa, enable Path of Discovery: Europa” and then to open it say “Alexa, open Path of Discovery: Europa”.

I have written a full review about the Amazon Echo Dot in my previous blog post.  You can read it here:

Lastly, if anyone has come across Amazon Echo skills that they find useful, feel free to tell us by leaving a comment below.

Photo of the Amazon Echo Dot. It has a round shape and four buttons on the top.

Written by Graham Page

How I’m Preparing to Run The Vitality Big Half Marathon

The journey so far

I am approximately half way through training for the Big Half, with exactly a month to go.  My first run was a test to make sure I could actually run for at least 30 minutes without collapsing in a big heap on the floor, which fortunately did not happen, and I felt invigorated to create a training plan, using resources from The Big Half marathon website and gathering advice and tips from friends who have previously run marathons.

There were a few initial points to tick off, and which I’ve already experienced the benefit of: get a good pair of running shoes, build up distance and time gradually, download a running app to track progress and take rest days in between big runs.  I wrote up my plan with weekly goals of what distance/time I wanted to reach.  Then suddenly the fear set in, and for the first week and a half of that plan I couldn’t bring myself to run.  I procrastinated through other means of building up my overall fitness; a yoga class, swimming and a couple of long cycles.  This definitely wasn’t a bad idea, as it gave me a chance to exercise and stretch other muscles in the body.

The breakthrough

Thankfully, with some encouragement, I managed to part ways with that apprehension and completed my first 5km run, and survived (side note: stretching afterwards is SO important!).  Each time I’ve trained since I’ve enjoyed it.  I realised that years of telling myself that I wasn’t a runner had instilled a belief that it must be an awful experience.  Running is certainly still challenging, and requires a lot of preparation [tip: set aside a good couple of hours for each run, to find that state of mind, warm up and cool down, perhaps take a shower after], and those first twenty minutes, for me personally, are a huge hurdle.  The self-doubt floods in, and I think about going home, or walking to the nearest coffee shop.  No, that can wait, I remind myself.

It’s all in the recovery

Last week I met with another friend who is taking part in the Big Half and we made more plans – but this time it wasn’t so much about the training, but for what comes afterwards: the Recovery. A huge meal on the Sunday afternoon post-race, then a sauna trip the next day and some more yoga to stretch out our sore muscles.  It’s also important, however, to build in room for recovery at every stage in preparing for the half marathon, and remember that you can’t expect to do it all in one go!

It was a great turning point to start thinking about what follows the race, and that there is still the rest of life to get on with once it’s over, but for now I am taking it, quite literally, one step at a time.  And with just four weeks left I’ve still got some way to go, and every little bit of support has given me a massive boost.  You can follow more of my training progress on Twitter and donate via my fundraising page here:

Thanks for reading and all your support so far!  And if you’re free on Sunday 4 March then please come and join East London Vision to cheer me on along with the other race participants!

You can also watch my interview with Ray from East London Vision.

Written by Joanna Lally