An honest warts & all sightloss blog. I'm living with Macular Dystrophy. To track my progression and hopefully help others. What will happen next?…
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...
I’ve been to my appointment to see the eye specialist.
This was at my local Eye Centre.
The Doctor referred me back to Opmathology after I seemingly got lost in the system during Covid-19 after March 2020. I had my last round of tests just one week before lockdown here in the UK.
I had the usual eye test. I was the same as I was before. This is distance.
Right eye 3 lines down. Left eye 4 lines down.
This is why I don’t drive.
Then I had the eye drops. They dilute your pupils so the doctor can see into the eye much better than without.
I had photography taken of my eye and then saw the consultant.
He looked into my eyes with the prism light and magnifying glass equipment.
We spoke about the tests I had had all that time ago. He said that the large swelling had disappeared on my retina.
I didn’t realise I’d had any I told him.
I explained that I needed cane training due to the difficulties especially at night and also increased falling.
He didn’t seem to have had any of the results. Not even the random field test I’d had in late 2022 either.
So he agreed that we couldn’t go into any certification without a recent field test so he gave me a yellow sheet to hand in to have an appointment sent to me for 4 to 6 weeks time.
The previous doctor said I was partially sighted.
So just waiting on that now.
All in all the appointment and the staff were amazing as usual. I was out very quickly.
PD 1 A hospital waiting room with blue and light wood chairs in the foreground. Windows are in the background with a large yellow poster with text that reads. Worried about your vision? We’re here for you. PD 2 A hospital corridor with chairs down the right hand side. Above double doors is a sign that reads Orthoptist.
I’ve come out this evening to attend the monthly Pontefract group of VIPs (Visually Impaired People) For our Christmas do.
There’s a reason I attend these groups.
I was thinking I was taking an arty shot of the early evening sun behind the trees, when in fact it was a streetlamp.
PD 1 Close up view of the train station sign. It reads Pontefract Tanshelf. Behind the sign are trees against the sky. A yellow blob looks to be behind the trees. It’s a light with a light coloured pole.PD 2 A black pedestrian ramp rises up to a bridge. There are trees in the background. In front of this is the tall street lamp that is on.PD 3 A low down shot of the station with the tracks and bridge in the distance. A large puddle is in the very near foreground.
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.
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.
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.
One Vision Blog 