My Diagnosis Story (Optic Nerve Hypoplasia and Septo Optic Dysplasia) | Fashioneyesta
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- čas přidán 7. 10. 2020
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In todays video I'm going to be discussing how I was diagnosed with having the conditions Septo Optic Dysplasia, Optic Nerve Hypoplasia and Nystagmus.
#WorldSightDay
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⬇️ More Content ⬇️
Living With Septo Optic Dysplasia: • Living with Septo Opti...
What Is Optic Nerve Hypoplasia?: • What is Optic Nerve Hy...
What Is Nystagmus?: • What is Nystagmus? Why...
Living With Hypopituitarism: • What is Hypopituitaris...
What Is a Secondary Adrenal Insufficiency?: • What Is an Adrenal Ins...
What is Hypothyroidism?: • What is Hypothyroidism...
What I Can and Can't See Video: • What I Can and Can’t S...
Visual Impairment Playlist: • Visual Impairment
⬇️ Helpful Resources ⬇️
Optic Nerve Hypoplasia: www.gosh.nhs.uk/conditions-an...
Living With Septo Optic Dysplasia: www.rnib.org.uk/nb-online/ten...
Pituitary Foundation: www.pituitary.org.uk
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⭐️About Me ⭐️
Hi!
Welcome to my channel! My name is Emily Davison, I'm just your average girl living with Septs Optic Dysplasia (I made a video on that) I make videos on disability awareness, lifestyle, fashion and beauty. I make vlogs with my Guide dog Unity by my side and I'm all about changing perceptions towards disability. Please subscribe for more and join the team!
Disclaimer: This video is not sponsored.
Thank you so so much!! Im new on you chanel.My doughter is 2 years old and she was diagnosed at 4 mo old.It was the hardest day of my life,but now after all this time and seeing wonderful people like you who want to help and give their experiences its much easier.It gives me hope that she would be able to live her life,and do all the things I thought she would not be able to do.thank you again and God bless you and your family. Im sure pretty soon she will be listening to you too❤️
Lovely of you to come to the comments and share your story. As a mother you must have been feeling a lot of mixed emotions. I hope things are easier for you now and you are getting the support you need as a family. I think platforms like CZcams and the Internet really have opened up a world of information and support to so many. I wish your little one all the best and by having you to encourage her to build her confidence and to grow she will go far. God bless.
Hi I really hope you can message me back because I would like to know the process you went threw for your daughters diagnosis I have an 18 month old that hasn’t been fully diagnosed
@@elizabeth998 my husband has ONH too. He went to an opthamologist at a teaching hospital in Utah as a child to get diagnosed. They ran a lot of tests and he didn't have anything else going on in terms of pituitary. His mom was really active in making him feel he could do anything he wanted to and apparently it worked. He is a Systems administrator now, father of seven kids, and will soon have a Masters degree. He only uses his vision as an excuse for not doing something when he doesn't want to do it in the first place. Lol! But he can't drive because the won't let him. He used to ride a bike everywhere but I think peripheral vision. He compensated for his vision a lot with his hearing.
We're having a baby in September and he's been diagnosed with SOD. What a great channel. Thanks for the all the info. You're kicking ass! Love the comments too. Very encouraging
You are a star!
Ty so much for sharing your experience , it as given us so much to learn and support on .
You are so welcome
My husband has hypoplasia of optic nerve. He can see well enough to read and works as a Systems Admin, but they won't let him drive, but he used to ride a bike everywhere when he was younger.
Hi Emily Great video x 😊
Thank you for sharing...you explained it well!!!
1. Your mom sounds awesome.
2. Your outfit and home decor are so cute. I love the fall colors.
Thank you for sharing your experiences.
Thank you so much!
Where I live, we still use the terms blind and visually impaired
You are an amazing girl. My granddaughter is 10, she was diagnosed with SOD when she was 3 months old. I have had custody of her since she was 18 hours old. I didn't go with USA traditional medical treatment, I went with therapy and all natural things and she is thriving. I appreciate you so much for showing others that even with this disorder you can do anything . I believe in you !! You rock it girl.
Hi! How is your grandd. ? Colours, close or long distance? My daughter has sod. 😔 how old is she now? May you talk about herself?
Great video hun I like your brooch
I have a lazy eye myself when I was diagnosed I was told my other eye was working harder to pick up the slack the optician said I was either 19-21 or 18-22 Vision and he did say that one day the other eye wouldn't be able to pick up the slack so well
A couple of years ago I got on a set of scales and I couldn't quite make out what the numbers said now I've chosen to put that down to me losing so much weight that the numbers have gotten smaller on the scales but who knows
Have a wonderful day my sweet xoxox
Thank you for sharing
My 5 month baby just got diagnose today that he got optic nerve hypoplasia
Your video cheer me up
Hello. My daughter has sod. She has optic n. hyp. And her brain has not septum pellucidum. Has your baby?
@@hulyaakbayrak3586 after brain mri doctor said he not SOD
But still have some problem in his brain that cant tell exactly what happen
Now I’m start moe genetic test will get result in 3 month
His symtom right now is his eyes cant focus like other child in his age and also global delay development
He still cant sit up well
@@teeraratfalla ı hope the test will go well. My baby’s physical development is good so far. She cant focus, has nystagmus.
Hello Emily,
I have several students with ONH. One of them is in highschool and has a few questions for you.
1. How do you get to work and other places?
2. Are you a Braille user?
3. Are you on a special diet, like the mediterranean diet?
My parents said the doctors wanted to do surgery to correct my eyes but my parents were worried that I would become completely blind
I think I have the same diagnosis but what can I do the country I live in everything is paid for
I am just praying for a miracle from the almighty god
other than just a miracle I am just waiting for the day that I go blind
I must say I appreciate your videos they are very educational and they help people like me to know what is the same problem that I am facing
I have this in my right eye, my left has complete vision, and my other is almost completely blind
I havesome books that I want to read but can’t because not one of my magnifyers can pick up the font so we are going to try and get then put into large print or audio book.
I was diagnosed with Optic Nerve Hypoplasia in 2013 at the age of 27 after going to get help for my chronic headaches. My parents took me to the hospital several times when I was younger to see what was going on with my eyesight and with the fact that I could not talk until around 3 but kept getting brushed off.
I was then diagnosed with Septo Optic Dysplasia in 2018 at the age of 32.
I qas also born with it
@@user-fp5hf2sq6i Hi! How is your sight? Colours, close or long distance? My daughter has sod. 😔 can you read book easily? May you talk about yourself? You are from turkey?
Hi! How is your sight? Colours, close or long distance? My daughter has sod. 😔 can you read book easily? May you talk about yourself?
@@hulyaakbayrak3586 hi! My sight isn't that bad as I have full vision in my right eye. I can read books fine. I am colourblind but it doesn't affect me too much. The only thing I can't do is drive.
@@raynex86 thank you so much for answering
Hey, I'm currently training with my guide dog and my trainer did your assessment!
Oh wow! Small world!
@@fashioneyesta indeed it is! Hope you're well :)
You mean they are still taking aplications?
You mean they are still taking aplications?
@@danielledewitt1 I'm not sure if they are right now because I applied last year!
I have Septo Optic Dysplasia as well!
Hi! How is your sight? Colours, close or long distance? My daughter has sod. 😔 can you read book easily? May you talk about yourself?
@@hulyaakbayrak3586 I’m totally blind in my left eye. I see light and some shadows in my right. I do not see colours. I also have hormone complications and agenisis of the corpus callosum.
@@Koda_Grey thank you for answering.💖
Hİ! Emily First of all I want to say that you are a very beautiful girl. I ran into your videos while wandering around youtubea to get information about my daughter's illness. I am a Turk and my daughter was diagnosed with Septs Optic Dysplasia. Since I am Turkish, I cannot understand the speeches very much. Can you write to me about this disease? thanks in advance
Merhaba ☺️ben de bebeğimin durumundan dolayı buradaym birbirimze yardmcı olabilirz ben de cok anlayamıyorum karmaşık ingilizceden. Turk bırını gorunce mutlu oldum. Benim kızımda hamileliğimde beyninde septum pellucidum yokluğundan şüphelenildi. Doğumdan sonra MR cekildi. Sonuç kesinleşti. Optik sinirleri zayıf dendi. Siz şuan ne durumdasınız
My son is going through diagnosis for SOD right now. He's also 8 months old.
same here my daughter haves ONH and SOD and she is 8 months old :) sending lots of love
I wish you both well x
Hi! How is your son now? Colours, his sight, close or long distance? My daughter has sod. 😔 May you talk about himself
@@siennaa.6976 Hi! How is your daughter? Colours, her sight,close or long distance? My daughter has sod too😔 May you talk about herself?my daug. cant walk now. She is stepping. She is 16 months old
I love hundreds and thousands yum.
I have someone really special in my life and she is effected by onh, I don't care about it but she told me that it is the biggest sadness of her life, I don't understand how she feels but I want to give her all the happiness she deserves, I want to know if it can be cured from what she said her optic nerves are not formed hence it can't be fixed I want to know if there's any other away we can fix so that I can help her in that.
I understand that she must be feeling frustrated because of it. I completely empathise with her. As far as research goes there isn’t a cure at present, it’s one of these very complicated things that scientists haven’t quite figured out yet. So right now I would advise to talk to her about things in her life she feels she struggles with because of her condition and look at ways to make those things easier. Sometimes the worst thing is feeling like you’re the only one who is going through it. But when you find people who have the same or similar conditions to you who can relate to your experiences it becomes a lot easier. There are lots of groups online that offer support for people with these types of illnesses. That’s the best advice I can give you ❤️
@@fashioneyesta Thank you so much for the quick response, but I really have no idea and I do really love her alot for me she is really perfect and when she told me this is the biggest sadness in her life,I felt really bad I'm sure she is not the the type who would want to meet people online who goes through, she acts strong but she is really sad about, I want to really help her, gain confidence and I want her to see herself the way I look at her and right now I feel really helpless, could you suggest me something here?
I didn't know I was severely visually impaired till this year which was a shock. I do have problems with my hormones but I'm not septic which makes no sense to me.
I hope you are receiving all of the support you need, both emotionally and practically with Mobility and other support.Whereabouts are you based? Being told that you have any form of disability or impairment is definitely a shock but there is a huge supportive network both here on CZcams and online. Definitely reach out. Take care
@@BlindGirlVlogs it was a shock, reality was written right in front of me. And I thought well this is how it is now. Getting support is well I have to do all the work to make people listen etc. Good old Somerset. Aww u to
Claire-louise Pitman things at first can seem like an uphill struggle and a battle but believe me it does get easier. For me it was coming to terms with losing the remaining vision I had at 16 and not knowing what to do and where to go and who to talk to. There was no support offered to me which was hard for me and my family of course. Please keep on asking for support and advice and reach out to services and organisations to enable you to continue living a full and active life. Just out of pure curiosity which services have you already reached out to?
@@BlindGirlVlogs oooh and I've applied for a guide dog. I've used RNIB to support my pip claim, I'm in contact with Somerset sight , dsa which gave me little equipment. that's all I have memory off. Oh gosh we need all the help we can get.
Claire-louise Pitman i’m pleased you are in contact with the relevant services who can assist and support you. Yes we do definitely need all of the support that is out there for us to live a fulfilling, active and exciting life.