Changing Perceptions on Sight Loss in Style
Greetings Everyone!
Welcome back to fashioneyesta.com
Today I wanted to share with you all something which is very personal to me and my life. Now over the past few weeks I have been networking with lots of different charities and organisations to do with disability, sight loss and health and it got me thinking about making a video in which I would explain my condition to you.
As so many people have seemed to believe my eyesight is the extend of my disability, but in truth there is much more than meets the eye (if you will pardon the pun.)
So, today I have to share with you a video I filmed on my YouTube channel on living with my condition which is known as Septo Optic Dysplasia a rare condition that affects 1 in 10,000 infants a year. The condition is a brain defect which affects the endocrinology system and can also be known to cause something called Optic Nerve Hypoplasia (in my case.)
In the video I talk about my condition, what it entails and how it has affected me in my early life and some of the things I have learnt from it.
Enjoy!
Thanks For Watching!
nice to see someone thats got to same condition as me.we could get to know eachother? if you could reply. thanks x
Hi Emily,
Thank you so much for this video.
My wife and I have a daughter – coincidentally enough also called Emily – who is nearly 2 years old and who has SODS. She seems to be in a fairly familiar place on the spectrum to you.
I just wanted to say that we thought your video was both very moving but also hugely helpful to us and, I’m sure, to many others who either have or who live with or care for people who have SODS.
We have been very lucky in that Emily was diagnosed at a very early age and has had lots of specialist help, but the condition is so little known and so misunderstood even by many doctors, let alone the public, that videos, blogs and websites such as yours can make a huge difference and can also provide a great source of inspiration.
Anyway – thanks again. I am sure any parent would be immensely proud of what you have achieved and continue to achieve, not because of but in spite of SODS.
If ever there is anything we can do to help, please don’t hesitate to ask.
Very best wishes
Roger & Emma (& Emily)
Hi
I showed my 12 year old your video this morning before school she was amazed! She has never met or spoken to anyone else with SOD she is hoping so much that she might be able to contact you for a chat? She too is very into fashion and has aspirations to go into fashion design.
Great video, well done very interesting to hear what you go through and feel, as a parent of a younger child with SOD it helps me to understand better so thank you! X
Hi Emily,
I loved your video, especially the parts where you talk about how it makes you feel physically on a day to day basis. My granddaughter has SOD and loved seeing you talk about having the condition because she’s only met one other person with it. She is 7 and recently needed her meds upped because she was tired and feeling ill a lot of the time. She has almost identical VI to you but a great personality and is very bright too. It’s quite inspiring for those with little ones with the condition, thank you for posting. Nicki X
I had my daughter Jan 2019 and she was diagnosed with septo optic dysplasia after constant illness and other issues as she was 3 months premature. They finally diagnosed it (by chance) when she was having eye laser surgery for a disease in the eye R.O.P which us common in prem babys. She now only has central vision due to this treatment, but they discovered her optic nerves were small and underdeveloped, which then leas them to investigate further and they found the posterior purturitry gland was also small and under developed. She has cortisone deficiency an underactive thyroid and is very small for her age.
It was so good to see your you tube video and here about the condition from someone who actually suffers as the doctors really haven’t told me and although she appears to show no signs of anything with her eyes we wont know till shes older and can tell us I suppose x