Links below are for my pages and support group on Instagram and Facebook.
Handy if you’re already on there.
ONE VISION FACEBOOK BLOG PAGE
– About my story so far. This directly mirrors and supports this website. This is added to now and again, carrying on the story, hopefully to help others or give an understanding of Macular Dystrophy (Stargardt Disease) to people with or without this condition. Giving updates on research, my thoughts, funny stories or full on rants!
ONE VISION MACULAR DYSTROPHY STARGARDT DISEASE FACEBOOK SUPPORT GROUP
– This is a private group anyone can join. Whether you have this condition yourself (Stargardt’s Disease or any Macular Dystrophy condition) or are a parent, guardian, friend or loved one that would like to ask anything or just observe. Everyone welcome. It’s set to private (This won’t change… Ever) so that people can feel able to openly ask questions, rant, tell your own story, post anything eyeball related you think that is interesting, funny or on your mind. This is so you can speak freely within the group without your friends and family knowing what you’re posting or commenting on. You may not feel comfortable letting them know your worries or feelings being seen within Facebook. Everyone in the group will understand thoughts and feelings from either going through the same in the past or present.
There is also an anonymously post function on if you wish to remain that way. Or if you wish, introduce yourself without this option and say hi.
This is a group led conversation. Your Group. This is about you, you reading this post now.
I chip in now and again, but this is your space to chat, learn from others, others learning from you and expressing yourselves. I’d love to hear about you!
All I ask is for kindness and acceptance to everyone and will say that no questions are daft questions at all.
ONE VISION INSTAGRAM PAGE
– That has more images than the other pages. This also runs alongside supporting this website.
Thank you to everyone who has joined, liked, shared or subscribed or any post you have taken time to read.
My inbox is always open to any of you. I’ve not got all the answers, I’m just someone living with this, learning as I go, just like you or like someone you know. What I have got though, is a superpower, I understand exactly what it’s like to be told you’re gonna lose your central vision and everything that brings along with this. I went to a very bad place for a long time. I’ve never really expressed to anyone how badly that shook me. If I’m honest, It’s like it cracked my soul to bits. How can you really explain the true shock and how frightened you are? Scared for the future. What I have learnt is, I do appreciate so much more the little beautiful things I try to see daily before it goes. I would have kept taking my eyesight for granted. Now, whats left is my greatest gift.
You are all helping by bringing and spreading awareness or learning about this little know rare genetic eye condition and/or blindness in general.
We really need allies to help educate and smash down the stereotypes, presumptuous thinking and the stigma of sight loss and what people assume blindness and living with sight loss entails to be.
See the person, get to know the person and not the sight loss.
Some of the most awesome, funny, kindest and genuine people I’ve ever met, that I now call my friends, are within the sight loss community.
I’m very thankful and It’s very bittersweet and fateful that I met them at all really. I only did because I joined a sight loss group locally, because of my condition deteriorating. Something always good comes out of something bad I like to think ♥
My One Vision Facebook Blog Page
My One Vision Facebook Support Group
One Vision Blog 