Author: One Vision

An honest, warts & all sightloss blog about living with a rare genetic eye condition, Macular Dystrophy, Stargardt's Disease. To track how this progresses in myself. Hopefully help others & bring awareness. Let's see what happens next...
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Medical Scams

Posted on by One Vision

Eastenders at the moment are highlighting medical scams.

The character Lauren Beale falls for a fake doctors lies about a trial that will help restore her youngest boys eyesight. The character of baby Jimmy has a Congenital condition called Chorioretinal Coloboma. So he is Severely Sight Impaired from birth.

This of course isn’t true, but she is cruelly tricked into sending £3000. Then when she tries to ring the doctor, his phone number isn’t available anymore and the messages stop.

Now Eastenders isn’t real life. But I have come across so many fake profiles of Doctors or people wanting to send untrue posts to my support group that I run alongside my blog.

I know these scammers try their very best to trick people who are probably caught at a stressful time, vulnerable or just hoping for help after diagnosis. Especially if you have a child who is sight impaired.

I know, because I’ve spoken to them and received messages myself.

I’ve had a few ‘doctor’s’ wanting me to write about them with the information they give me and or their Facebook page or the scam website. They contact me on my blog pages messenger service.

I’ve had people wanting to pop links to tshirt sales supposedly advocating blindness and being part of the community. They either are on pop up new websites, don’t donate to the charities stated or don’t exist at all. There is alot of that. They have thousands of different graphics wanting posted depending on the groups they try to join.

On my support page, I used to let anyone post free and easily. I didn’t vet the posts as I trusted that people would just be there either to read the posts in the group or contribute their story or something useful they thought people would find helpful.

Now I’ve popped post approval on.

I still get some people that slip by as I can only vet so much re the people who try to join the group.

I can ban people, and have done, if they are looking abit shifty. Profile behaviour wise.

Sometimes links and comments are made within somebody’s post. Stating a cure. These are sometimes reported to me directly or I come across them when checking a recent posts comments. I have to safeguard the people within the group. There’s nearly 500 of us at the moment. The link is below this paragraph.

Click to my Support Group on Facebook


So many fake pages. Fake profiles of people trying to scam us with giving false claims of cures or treatments.

I’ve always reported these but Facebook really doesn’t do anything at all. The amount of times I’m reporting these, then get the ‘we found this profile doesn’t go against community guidelines’

You can ban people or give warnings. I’ve banned plenty of people but you usually get a ‘spidey sense’ with these things. Any additional profiles they make or any others belonging to them are banned automatically from the group too.

Well step up your game Facebook!

There isn’t a cure or treatment as yet for Macular Dystrophy Stargardt’s Disease.

This doesn’t mean our world should stop and we should just sit and wait for a cure or treatment. Absolutely No. No way!

We need to carry on and enjoy life. I’m not waiting for a cure. Or treatment. I’ll write about any I find because it’s interesting to learn about what’s being discovered about our faulty gene variants.

Safe to say I’ll keep batting these people away.

A close up of the screen of the character Lauren Beales phone. On the phone has a message from a fake doctor. Pushing her to pay money for an appointment. Stating it could help Jimmy's sight considerably. She sends the £3000.
PD 1 A close up of the screen of the character Lauren Beales phone. On the phone has a message from a fake doctor. Pushing her to pay money for an appointment. Stating it could help Jimmy’s sight considerably. She sends the £3000.
Posted in How I'm Adapting

Magnifying for safety

Posted on by One Vision

Something that happened a few weeks ago, twice, because I didn’t use my handy magnifyer. I wouldn’t mind but it’s always in the front of my handbag.

I ended up taking too many Co-codamols for pain thinking they were Paracetamols because I was in a rush to meet my friends at Pontefract, for the VIP meeting there we have every month.

I’d forgotten I had these in my bag and only thought I had Paracetamol.

I ended up realising what I’d done so didn’t drink anything till alot later on. Just because I couldn’t be bothered to use it. It nearly ended up in me not attending at all.

Then, like a complete idiot, I took 2 of the same night-time tablets instead of one of each that I take to help me sleep and for my mental health. So I couldn’t hardly take the correct one aswell, as I’d already taken too many.

Bonkers isn’t it.

I can’t read the back of the pill packets to differentiate what’s what with just my glasses on and these silly moments of not getting my magnifyer out could have caused no end of sickness or problems for me so I’ve learnt my lesson.

Cartoon image of a blonde long haired woman. Sat with knees bent with pill packets in different colours and pills, on the floor, by her knees. She holds a bright neon yellow magnifying glass reading the packets and discovering what they are.
PD 1 Cartoon image of a blonde long haired woman. Sat with knees bent with pill packets in different colours and pills, on the floor, by her knees. She holds a bright neon yellow magnifying glass reading the packets and discovering what they are.

A photograph of a neon yellow magnifying glass placed on a brown table in close up.
PD 2 A photograph of a neon yellow magnifying glass placed on a brown table in close up.
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Rainy days and Photophbia

Posted on by One Vision

Whilst waiting in the bus station on one of our coldest, wettest days of the year so far (I think so anyway) I thought I would write a little blog about how the wet weather and rain affects my vision and my photophobia in particular.

Photophobia isn’t just about the suns glare. It’s any glare. Light, water and otherwise too. I’ve even had it from glass and coins. I’ve found coins because of it though 😉
My bus back home has missed yet again and because of the weather the Uber fares are quite expensive, so I’m sitting it out until the next bus. Fingers crossed everyone that that one comes.

I made a graphic last night to explain this. A real photograph of my trip into my home city the other late afternoon and a doctored one to get the nearest depiction of what glare does to my eyesight.

I do get glare through the day, any day, not just summer sun. The light and glare can bounce of cars, appears brightly around corners. Especially if sat in a moving vehicle which I try to catch as I’m now very used to avoiding bright light and where it appears from.

In the late afternoon and evening, this also happens as the light drops into darkness from traffic lights, shop lighting and wet surfaces, puddles etc.

This is nearly exactly what I see.

It hinders my confidence getting around in the low light. It also makes things seem alot blurrier. Which I’m blurry anyway without this adding to the effect.

The pavements seem to shine. Reflect back at me.

I cannot wear my usual trusty sunglasses I have through the day all year, as they make it too dark to see at all.

It’s very hard to explain what I see. Especially as I seem to get around sort of ok with no white cane as yet, to help. This is something I’m going to have to sort out though.

You just can’t see the cogs whirring inside my brain checking out all the possible dangers. It is abit like a duck or a swan gliding around.

I wear grippy boots because I’m frightened of falling again if it’s dark and wet.

You just cannot see my frantic feet peddling away getting me around.

It does help knowing extremely well, my route around the city I’ve been visiting all my life.

Anywhere I don’t know, I wouldn’t march around so quickly.

A late afternoon darkness descends on a city. Traffic lights are at red and the wet precinct gradually goes down the hill. The sky is a darkening blue colour. The shop lights are on brightly as its just near closing time.
PD 1 A late afternoon darkness descends on a city. Traffic lights are at red and the wet precinct gradually goes down the hill. The sky is a darkening blue colour. The shop lights are on brightly as its just near closing time.
The same photograph as PD 1. The view is blurrier. The red traffic lights are elongated and brighter. Stretching towards the foreground. The shop lights are very bright now. They take up some of the pavement. The pavement shines because of the wet weather.
PD 2 The same photograph as PD 1. The view is blurrier. The red traffic lights are elongated and brighter. Stretching towards the foreground. The shop lights are very bright now. They take up some of the pavement. The pavement shines because of the wet weather.