Living with Septo Optic Dysplasia | Fashioneyesta
ฝัง
- เผยแพร่เมื่อ 31 ก.ค. 2024
- Greetings Everyone!
Today I'm going to be discussing what its like to live with Septo Optic Dysplasia. Septo Optic Dysplasia is a congenital condition which impacts my pituitary gland and my endocrine system. It is also what caused me to have a visual impairment (Optic Nerve Hypoplasia).
Watch this video if you want to learn more about how I live with the illness including what medication I take and how I mange Septo optic Dysplasia.
In the video I sure my experiences from a child, how my condition affects me and some advice on living with a pituitary condition.
I'm sorry if this video isn't to your liking this week, but this is very personal to me and I wanted to make it.
Please Note: I welcome comments and feedback as this is intended to be a discussion topic, but please be sensitive to other people when commenting. Thank you all in advance! :)
Don't forget to like, comment and subscribe and check out my other social links below.
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Music: bensound.com
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Useful Links
The Pituitary Foundation: www.pituitary.org.uk/informati...
Hormone Health:
www.hormone.org/diseases-and-c...
Septo Optic Dysplasia and Optic Nerve Hypoplasia Support Group:
/ 120225918004788
Medic Alert
www.medicalert.org.uk
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I live with Retinitis Pigments, and some other health issues. I lost my vision completely at age 14, and now at 21 work as a motivational speaker, write blogs and make weekly videos here on TH-cam. I'm so happy to find another young person living with vision loss and disease. who also loves fashion and beauty and breaks that stereotype! I'm so happy you are here educating people. :) I subbed! Keep doing what you're doing. Feel free to check out my channel as well! It would be really cool to do a collaboration together, as two young girls who love fashion, but live with vision loss!!
I just found out that my baby has this. We won’t know about her eye sight till she is born, but she is still loved. Thank you for explaining :))
I watched this last night when I searched up "septo optic dysplasia" and it made me cry seeing someone else with almost exactly what I have. For the first time in my whole life, I haven't felt alone. It's impossible to put into words how lonely I felt and hearing about you with this condition and the exact same meds as what I take really helped me. Thank you ♥️
You are not alone.
My daughter had same SOD.... 😢
Hi Emily! My name is Charissa and I am from the Netherlands. I was diagnosed with a pituitary tumor in 2010. This tumor pushed on my optic nerves and my pituitary. I no longer have a pituitary gland. And my optic nerves are also damaged. I see better with my right eye instead of my left. So I have hypopituitarism and diabetes insipidus. Actually it's weird to say, but I love to see other video's about this subject. It won't make me feel alone. Thank you!
My 7 yr old was born with the same condition. Doctors said he was blind, now they say he only partially blind. I pray God every day for him to grow up and become the man he wishes to be. He wants to be a scientist... Nothing impossible for my creator!
I have the exact same thing as you, except that I am completely blind. Our condition is very rare, so thank you for sharing! :)
My baby boy (4 months) have septo optic dysplasia too, and when I'm found your channel I could feel that my boy will have a happy life like you, and who knows.. Becomes a youtuber 😂 thanks ☺
Absolutely he can. I have SOD too. I graduated from uni last year with a 2.1 grade degree and now I'm working on publishing a book. Your boy will be just fine. xx
Just received news, my granddaughter, is diagnosed wth SOD
He can! There will be struggles every now and then but it’ll get better I have the condition too and I have a TH-cam channel for it too
Hi Micaela. Hi Jixie Dye. hi! İs there any problem in his brain? My daughter has sod. There isn t septum pellucidum in her brain and she has optic nerve hyp. She is 9 month now.we learnt this when she was 4months.
Luckily, I grew up with my parents and brother treating me as any little girl despite my eyesight. Blindness wasn't an excuse for my brother to not be a pain in the ass frequently. I also had the best kind of friend in elementary school, the type that never considered my blindness at all. Come on, let's go play in the woods down by the creek, that was her attitude. Though we've grown into very different people and live across the country from each other we're still very close. A good suppot system is essential to anybody, blind or not, and I'm so lucky I had that growing up and still have it now.
I also have septo-optic dysplasia! My sight isn’t very good, but I’m not completely blind. I’m legally blind in my left eye. My SOD also affects my pituitary gland severely. I have a cortisol deficiency, diabetes insipidus, hypothyroidism, ADHD, and a growth hormone deficiency. I take a lot of medicine every day and I hate it. I’ve struggled so much within my young life, and I sometimes get scared about my own worth because I feel like I sometimes don’t try hard enough. I’ll never be able to drive. Stuff like that and the fact that not as many people (including my managers at work) don’t pay attention or understand my disabilities. What perks me up is seeing people like you speaking out and advocating for yourself!! We need to speak up about this disorder and let people know about its wide effects! Stay strong, and stay awesome. I appreciated this video so, so much.
Well said!! I have SOD too! I keep 1/2 a peanut butter sandwich by my bed and set an alarm to eat it at night. I have noticed that a lot of us with growth hormone deficiency look very young!! Glad to see your video!!! Sending love from Canada, LA
Hi! My daughter has sod. How much sight do you have? And is there any problem in your brain?
I didn't even notice that well same I'm 18 and look 14 😂
@hülya akbayrak hey I'm just going to reply to that because I have sod too. Greetings from Germany .I got lucky I have 80% in my right eye and 10 to 20% in my left eye.What about your daughter
I have SOD and ONH as well, and I’ve had alot of people say I look very young for my age. I just turned 40, and I’ve been told I don’t look much older than half that age lol.
My daughter was same SOD.... She looked very young too....
Also glad I never had any Cognitive/learning difficulggies or other mental issues. I didn't even know for sure that could be a byproduct of SOD until recently. I've seen personally, though, that like she said two SOD cases can be very different from one another. I went to a school for the blind from fifth grade on and one of the boys in my class had SOD. I remember him being a little imature and having more behavioral-type issues. It's really quite interesting how one single condition can differ so drastically from person to parson.
My daughter has this condition and she has been wearing glasses since she was 10 months and it affects her endocrine system and lowers her seizure threshold. It is hard for people to understand what is going on with her because she doesn’t “look sick”. I enjoyed your video
I have literally everything you have I’m so glad you put this out there Thank you
Fantastic Emily Love The Way You Always Think Of Others And Try To Help Them Love You So Much xxx
Bless you!! Thank you for sharing your story!!
You are a real inspiration! Thank you for educating me and others who were unaware of this condition.
These is the first time for me to right any comment in TH-cam my baby is 60 day and we founded he has cod and your videos make me feel relaxed thank you so much 🙏🙏🙏🙏
Thank you for making this video! I have a young student who has Septo Optic Dysplasia and I was looking for more information about the condition and your video popped up and it's always better to get information from someone living with a condition. Thank you for being such a good source of information on your lived experience, that will help me keep an eye on this little girl moving forward. I hope things are well with you
Thank you for this! I showed my daughter your content (she has S.O.D) and she couldn’t be happier having someone she can identify with, even if she doesn’t know you. You made this little girls life a little easier.
Well Done Emily. Great Video on how you deal with and function with your very complex medical condition each and everyday
Thank you for sharing this! My grandson was diagnosed at 6 mo. He is now three and we are learning as we go. You have provided us with good information and I am so grateful!
You are very welcome :)
I have septo-optic dysplasia too I also suffer with nystagmus migraines and also multiple mental health disorder however this is not a sob story I am trying to stay positive and get through it I can see the light at the end of the tunnel you help me every day get through what I need to do your positive outlook on life helps me so thank you
I'm in school and we just learn about septo-optic-dysplasia and I wanted to see what some people experience living with it. I came across this video and I just wanted to let you know that it made SOD much more real to me and helped me learn more. Thank you so much for this!
I'm glad I found this video! I'm trying to learn more about it and understand septo optic dysplasia as my 7-year-old struggles with it as well and can hardly see out of her left eye
I wish you the best,
I'm 62 years old and was born with SOD, didn't know what it was called until about 10 years ago. I'm blind in the left eye, really bad sinuses - almost no sense of smell, was given Human HgH when I was a child which helped me reach 5ft 3in. Adrenal and Thyroid seem to be working fine, I have them checked now and then. Although my weight is on the high side (230 lbs), take blood pressure medicine and diabetic type II. They caught on to the pituitary when I was around 12 years old, so there was ample time to correct growth some. Fortunately, I have a deep nose bridge which helped extend my peripheral vision on my blind side
It was hard to diagnose when I was growing up, MRI's hadn't been invented yet - so I had lots and lots of test. Later on, when MRI's came out my pituitary showed up as an incidental when I had my neck examined.
What I've not figured out is if this condition is related to random pinpoint pains that show up in different parts of the body at different times.
I'm blind in my right eye as well! And the underactive thyroid, I struggle with that as well. Also have blood circulation and blood pressure and low blood sugar and temperature adjustment issues and take hydrocortisone. We're so similar. I'm not alone. This is... I can't believe I'm not alone. Diagnosed at 18 I too did not have the benefits of medication in childhood. I did not realize I should still be taking growth hormones. Will be talking to my endocrinologist for better treatment options! I'm not alone?!
My soon to be two year old has SOD. We don’t know how well he sees however we know it’s greater in the left eye. He is truly the most energetic baby I’ve ever seen. He is constant running around crawling under things , standing on his tippy toes grabbing things,opening and closing things. So it leads me to think he sees well enough however we just truly don’t know . He gets his blood work done every 4 weeks and his blood works been coming back great since he was 6 months . Hopefully this encourages someone❤
I also can only see alot out of the left eye too it’s hard.
This was awesome, you are a great speaker
Thank uou so much for this video my daughter was recently diagnosed with this and youve given me a little more of an understanding. Thank you so much
Hi , I am the same as you , I felt like sometimes I am the only one in the world that is like me , I always felt like I am so different , I take hydroquartisone , thyroxine and growth hormone , I was in hospital about 6 times a month , I feel like I can relate to you , my blood sugars at times have went lower than 1.1 , thank you for making this video because I feel like I am not the only one with this condition, thank you xx
Thank you so much for your videos!! I am completely blind in my right eye like you. I have SOD/ONH, Hypothyroidism, and I'm just now starting to see an endocrinologist at 30 years old. I wondered why I seemed to struggle more than others. If my body overheated, I didn't eat enough, stood up too fast, had blood drawn, I would pass out. Now I know what has been causing it. I don't think the doctors knew much about it when I was young. I wish there was a group or a way to reach out to other adults who have this condition. Maybe some of us could come together to bring awareness for the future of the children diagnosed with the same thing. #wishfulthinking Thank you again, you are amazing!!
You do such a wonderful job explaining Adrenal Insuffiency secondary. This is the 2nd video I've seen of yours Tonite. What a beautiful young lady you are. Sharp as a tack. I've had SAI for a year. Just figuring it out. Believe I have had it since I was a young kid of around 8.I was always sick and it was brought on by stress. Moved around alot when I was a child. So had to wait till I was 56 yrs old to get diagnosed. As well I have Nystagmus going on with my eyes. Vertigo and problems with balance and blurred vision. Had a eye injury at 7. Had a crossed eye for years. Eventually had surgery to correct it at 11.So only when I'm very tired or have issues with my sugar being high or low I can't see. I also have Sjogren's which is a autoimmune disease. Dry salivary glands. Dry eyes and nose. Dry throat. I will say the other video you did sitting at the table next to your pink or red rose was even better then this video. Both excellent videos on Addrenal insufficiency secondary is the best video out there from info on someone who has it trying to explain it to others or medical professionals. Kudos Excellent. You could have your own show about anything that is of interest to you. You are brilliant in your knowledge and how you come across. Wow. Great! Fantastic 😅.I do have a question I just switched to 25 mlgm of HD a day in a circadian schedule. Haven't been able to get out of bed much. Homebound mostly. Just told my Dr. He needed to up my steroids. So about when do you know you need that last 5mg?Have you applied for a aid yet? Wanted to tell you facebook has a excellent Adrenal Insuffiency group that is closed group. Keep a white back ground. They are professionals and educated people and information to print off stuff for the medical professionals or Doctors at hospital.. Maybe helpful to you in the future if you have some issues. Also print off stuff is great. Thank you again my new friend. Really needed this wisdom and you said it how I could receive it, Thank you from the bottom of my heart ❤️💕❤️♥️🐦🐇🦉🐿️
My son Has Septo optic dysplasia totally blind in his left eye and nstagmus he has to wear glasses full time unwise he gets very uncoordinated and is a lot less confident he also has panhypopituitarism (born without his pituitary gland) so all very similar luckily was caught early within his first week of life and got onto medication straight away he takes all his tablets and gh injection like a champ though his im hydrocortisone one he gets scared of and tries to fight the nurses off in hospital but after awhile he is ok with it.
My son also has low functioning autism adhd and intellectual disability but through all that he is going really well.
Glad to hear videos like this makes us not so alone.
Watching you has given me hope for her thank you
Hi my name is Angela. I have the same condition as u, de moiser syndrome. I'm 34 years old and was diagnosed at the age of 5 years old. I think it's cool that you made a video about the condition.
I freaked out when I saw this title, I also have sod, my optic nerves are under developed and also have growth hormone deficiency! I think it's great that you made this video, it raises so much awareness and answers so many questions for those who don't know about the condition.
+Chloe Elizabeth Thats wonderful :) I'm glad it helped
I have SOD, my optic nerves are under developed as well, growth hormone deficiency, hypothyroidism and midline defect!
Hello Ryleigh.My daughter has sod,midline defect(septum pellucidum) How much sight do you have ? Do you wear glassess?
@@fashioneyesta hi! I want to ask a question. İs there any problem in your brain? I wonder this.My daughter has sod. There isn t septum pellucidum in her brain and she has optic nerve hyp. She is 9 month now.
Me to but im not pisitive about it
Thank you so much for such a clear explanation of this. You are truly remarkable. Stay strong
Richard Henry Thank you so much, I'm glad this helped you :)
I just saw your video about your makeup starter kit for people who are visually impaired - thank you so much for making that! :) I have nystagmus and i'm registered as blind. This was super interesting, learning about your condition! Ella :) x
Thank you so much for your lovely comment :) And I'm really pleased that you liked my makeup starter kit! Let me know if you have any suggestions for future videos or any questions for a q&a video I will be doing x
I really enjoyed learning about your condition. I had heard of it before but I never knew all that it entailed, so thank you for making this video. You're an incredibly strong person. I hope you realize that.
Thank you so much :) I'm really glad this video has helped
Another one captioned for you Emily (there should be a children's literature one in your queue I did last week as well). And this is a wonderful video - I've never known anyone with this kind of condition, so it's a very interesting insight, very well explained. :)
Aww thank you so much Glen thats amazing! :)
Wow. As a sibling of someone who has Septo Optic Dysplasia but is also non verbal with learning disabilities I have learnt more about his condition (and how it might make him feel) from watching this video than from any medical professional. THANK YOU! X
it’s learning disability’s for me I can’t learn how to read.
I commented on your other video. I have a very similar situation to you. I have Optic Nerve Hypoplasia, pituitary issues, nystagmus, etc. You're not alone :)
I have SOD and ONH as well. Up until now I didn’t care to understand my health issues. Not sure why. But I understand myself better. Thanks
Thank you for making this. I have Septo Optic Dysplasia, a visual impairment, and Hypothyroidism. I have always been really anxious when it comes to my health, and this video really brought light to the conditions I have. Again, thank you!
Hello. My english is not very good. My daughter have sod. How much you have sight?
Hi I’m nearly 17 and have the same condition at you. I have never met or come across someone with the same condition. I have watched your channel for a while now but have not been able to reach out. I have noticed that we both share very similar symptoms. P.S I really enjoy your content 🥰
I love your video My daughter is 14 with the same exact problems onh sod adrenal insufficient growth hormone deffieciency. I appreciate you making this video you did a great job .
I have septo-optic dysplasia as well, ticking off all three boxes no less. I can't believe there's someone on youtube with this! I was diagnosed at 18!
All the best young lady.
Hi Emily! My daughter is 13 months old and has SOD. (Diagnosed when she was a few days young). Her name is Emily too :) thank you so much for this video! I’m a single mom and getting this diagnosis of my baby .....it was the hardest time in my life. Your videos gave me hope that her life will be as beautiful as yours. Thank you.
Hello Vanessa. My english is not very good. My daughter have sod. How much your daughter has sight?
@@hulyaakbayrak3586 merhaba hulya hanim benimde oglum 3 yasinda sod hastasi 1yas 2 aylikken konuldu teshis benim oglumun gormesinde hic problem yok sadece yuruyemiyor fizik tedavi aliyoruz gelisimde de problem yok yasitlarina gore boyu kilosu normal
Thank you so much for making this video. I too Septo Optic Dyspalsia. It was so great to hear that there are others like me. I really wanted to thank you, because I've wanted to start a youtube channel for a while now, but I was (I still am) so self-conscious of my nystagmus and lack of focus. I saw this video a few weeks ago and it really gave me the push I needed. It takes a lot of guts to do what you're doing, and you have been a great inspiration for me! You do such a great job with all of your videos. Thank you again from the bottom of my heart. You are an inspiration!
Thank YOU so much for your lovely comment, it means a lot to me and I'm glad I've been able to help :)
Hello Ordinary reader.My daughter has sod. İs there any problem in your brain? I wonder this.There isn t septum pellucidum in her brain and she has optic nerve hyp. She is 9 month now.do you wear glassess? And how much sight do you have?
Thank you very much for this video. I’m currently 31 weeks pregnant and just found out my baby has an absent csp and malformation in left and right brain. I won’t know until she is born if she has pituitary issues or ONH but this video does make me hopeful, that she can still have a good life.
I have Septo Optic Dysplasia too. It's nice to make a video about it.
Jezz Gaming me too
My daughter had SOD and limited vision.. I love that u have the courage to speak out about this condition because it is not too well known.. Just wanted to say thank you ❤️
+Sammi Greenhorn Thank you so much x
thank you for this! feels good to not be alone, I have it too :)
love what you are doing with your channel my daughter has SOD and us growth hormone deficient.. and loves acting and fashion nd make up and mermaids lol... great to see you doing so good I wish she knew more people or kids with her disease she feels so alone I will show her your channel she is six..
Thank you :) and I'm glad my videos help, lots of love to you and your daughter.
My daughter has and was medically diagnosed with all the medical conditions that you have mentioned in this video.my daughter was put on hydrocortisone and thyroid medication and growth hormone called norditropin
I just found your channel and I'm excited to check out some of your videos. I also have SOD and have pituitary and hormone aspects of it too.
Jamie Allison I hope you like them :) Let me know if you have any questions or suggestions
Love them! Will do, but so far, all I can say is keep up the wonderful work!
I have just had a baby almost 3 weeks ago who is still in the NICU and has been diagnosed with hypopituitarism. She had an eye exam a few days ago; I haven't been given any results but have been told she is at risk for SOD. I am so scared for her. I appreciate your detailed video of this but this is so heartbreaking 💔😭
+Krissy Burke I totally understand, my parents felt the same as you not knowing how it would affect me in the future. But, I promise it will get better, SOD is manageable once the doctors figure out what you need. I live a relatively normal life and I manage my condition very well. Don't be afraid to ask lots of questions, if your worried voice your concerns and there are also lots of Facebook forums for parents of children with SOD and other pituitary conditions. If you ever need to ask me anything or need any advice let me know. I hope it all goes well with your daughter and best of wishes to you both x
I've been watching you for over a year, and didn't know you have Septo Optic Dysplasia. I also have it, and have several health problems because of it including an under active thyroid, I used to be on growth hormone injections as well but am not as of now. The condition caused by my SOD that has the biggest effect on me though is called Diabetes Insipitus, which is a pituitary condition that causes trouble regulating my sodium levels. This causes an EXTREME and unquenchible thirst, excess urine output, and even seizures when I'm either unmedicated or my dosage isn't right. The Diabetes Insipitus honestly effects me, and bothers me much more than my visual impairment.
I'm the same exact way :/
Same exact way. I. Just got out of growth harmone injections I’m so happy for that but i also have thyroid problems and Diabetes Insipidus. I also used to have seizures not any more
I also had to take growth hormone shots (But due to complications I didn't take them all the time that I was supposed to so I'm short) I also take medicine for thyroid and cortisol (That's more of a family thing) I also have diabetes insipidus. I don't have seizures or anything and not as severe as you but it is annoying to be constantly thirsty and being unable to quench that thirst for longer than a few seconds.
My 5 month old daughter was just diagnosed with ONH. We will be going to a specialist soon to see if she has any hormone problems.. Thank you for your video. It has helped me, a lot.
+Jandi Brailsford I'm really glad :) Best of luck with your daughter x
10:45 you can also get an adrenal crisis by just having a stomach virus. I had an adrenal crisis in January of 2019. Me and my mother both think that it was caused by a stomach virus. An adrenal crisis is absolutely terrible and I prey to god that people with any type of adrenal insufficiency doesn’t have to go through that in their life.
I have SOD and hypopituitarism as well. Agree with everything you say
I have that as well. I'm a graphic designer and I have to tell you, so many people doubt my artistic ability due to my eye problems
Glad to know I'm not alone
This was a great video! I also have panhypopituitarism and SOD/ONH. Our cases sound very similar! I hate that we both have to go through this, but it is comforting to know that we're not alone.
I'm actually about to start up a podcast with another person who has this where we will be discussing what life is like as a congenital PHP patient. If you ever want to be a guest and talk on the show, we would love to have you! It's just in the early stages of planning now, but we have high hopes for it. :)
✌️Wishing you all the best of luck with your treatments!
Thanks hun :) Through making this video I've made so many contacts and online friends who live with the same condition. Which is really encouraging for me to hear.
Thats wonderful! I hope it goes well. I co-run a podcast channel myself so if you ever need any advice feel free to email me.
Of course I'd love to be involved!
Drop me a line at fashioneyesta@gmail.com whenever you like not just about podcast stuff if you ever want to chat xx
Best of luck to you too hun :)
Thanks so much! I'll definitely be in touch!
Yeah, it's amazing how many other PHP patients I've met through my videos as well. It definitely makes the world feel a lot less lonely!
I'm going to have an episode of the podcast specifically discussing what treatment is like in countries that have universal healthcare, compared to what it's like here in the U.S., do you think you might be able to join us to talk about that?
I couldn’t believe what I was hearing when I stumbled across this video! I found it quite by chance and, crazy as it sounds, this is me down to a tee!! I too have had issues with hypoglycaemia which I’ve never managed to get people to understand. In fact, I found this video just when one of my support workers insisted that I wasn’t disabled, and refused to listen to me when I tried to explain the condition to her. Naturally this tore me to bits so this really couldn’t have come at a better time for me. I have no sight at all, and also have epilepsy which has come and gone over the years, but is made worse under stress and my cortisol levels are out of whack. Other than that, everything else you spoke about is the same for me as it is for you! I too had problems with eating as well for the same reasons, as well as the fact that I was in and out of foster care from the age of ten. Again, this might not be obvious to a lot of people. On the whole I’ve recovered very well from this problem, but there are still some occasions when I reall do start struggling. Over the years, it’s been music that has saved me, in the same way as fashion did for you!! I do think you are very brave to share these things with the world. It takes a lot of nerve and a lot of courage to do this, which I do not feel I have just now. I cannot tell you how grateful I am to discover your channel and the work you’re doing to change peoples perceptions about living with a disability. Haves about so much and being in and out of care when I was growing up, I am only just beginning to catch up with myself and really start to fully comprehend this illness for what it is!! It’s silly, but until recent years I never even thought of it as an actual illness/disability, even though deep down I knew it was!! It sounds really daft I know!! It certainly didn’t occur to me that I might need a medic alert bracelet until my consultant suggested I think about getting one! Sorry if this sounds daft, but where did you get yours from and how did you get it? I also didn’t realise how serious it is if we went in to adrenal crisis, so thank you so much for highlighting such an important issue!! Having said all this though, insomnia doodles, if you ever needed any contributors/guest speakers, I am happy to offer what input I can from the UK. Emily, bless you for all you are doing and for inspiring people all over the world! I would love for us to connect online, and if there’s anything more I can do to raise more awareness of these conditions, I would be happy to help.
Kez xx
I was born with SOD ( blind in my right eye and alot of endocrine issues) as well.. I underwent menopause at age 32.
It's great to see awareness being brought to this. I also have SOD. I have useable vision in both eyes but it's much worse in my left eye. I can't read print at all with it unless it's really close to my face. My right eye is better but I still rely on Braille for writing things as well as speech output on my PC, Mac, tablet, and phone. I was diagnosed at 4 months of age back in the summer of 1991. At first they were under the impression that I was totally blind. They only knew for certain I wasn't when I became old enough to talk and pointed out my mother's pink shirt. On the off chance I did have any eyesight she pointed out colors and such to me as if I could see them.
Thank you for this!
Very interesting.
I have a soon to be 7 year old whom is also under GOSH with S.O.D.
I have it too and it’s nice to know I’m not the only one, I have the same sight problems as you do but I honestly forget that I can’t see half of the time 😂
My son was recently diagnosed (4yo) I found an interview you did and then searched for your channel when I read you had one ❤️ watching this really helped me so thank you
Hello. My daughter has sod. How much sight does your son has?
@@hulyaakbayrak3586 he has an astigmatism and and a little farsightedness. He’s wearing glasses to correct it. How is your daughters sight?
@@JenPapp we don t know yet :( She will take VEP/ERG test. After that we know. We are so anxious for her sight.She is 9months now.when you knew astigmatism, how old is your son? What his eye number is? And did your son take Vep/erg test?
@@hulyaakbayrak3586 I know we saw a neuro-ophthalmologist to check his optic nerves. I’m not sure if the testing done is the same of what you’re getting done, but if it is all they did was dilate his eyes and the doc looked at them. I don’t know his exact eye numbers but he has 0 chance of going blind, he has his optic nerves they are just small.
The fact that she is 9 months and you’re getting this testing is amazing. You’re doing a great job mama/papa. My son was 4 when we got his testing (just this past February for the eye test).
hi emily, my name is Isabel and have a 4 year old boy with SOD, all the things you have mentioned are the same as jhons. its great to see a young girl speaking about this as I look at my boy down the line when he gets to your age. He is starting school next year and im a bit scared of him been picked on. He will also have an SNA. Did you have an SNA in school? I was thinking of getting him a bracelet for the medical record and your one is realy perfect where do I get one for him? thank you very much for your video it really means alot.. thank you xx
Hi I really enjoyed learning about your health condition. I too suffer from a rare condition called bardet biedl syndrome. As part of that I have a eyesight condition called rod cone dystrophy. I have some remaining central vision that is patchy but no perphiperal vision I also have a under active thyroid and struggle with my weight and I also get very tired. I have kidney damage and I was born with extra toes on each foot which I had removed. I go to a specialist clinic at guys hospital in London along with moorfields eye hospital! Like your condion it affects everyone in a different way.
TheTezzie1234 Hi there, thank you so much for talking about your experiences with your medical condition. I think it can be so helpful for people who don't have medical conditions to know about how it can affect others. So many people can often not think outside the box and it helps for them to know about the many different conditions out there. I hope your condition is stable though and I wish you all the best :)
Very helpful taught me more about one of my condtions x
I'm glad to hear it x
I also have hypothyroidism and adrenal insufficiency and vitimin d defeciency and pituitary Dwarsm and more and you're really inspiring
Thank you so much x
Born with SOD but had reconfirmed by a new neurologist back in 2019 after my 19th lifetime tonic-clonic episode, mine are rare 2x year since 2008 but before then I had 5 and those were up to 1996.
I'm also growth hormone deficient though luckily mine was caught early enough I was able to grow normally. However, it's likely I was given too much by one doctor in partticular as a child because I'm a woman with size twelve feet. Hard to find cute shoes with them, really. I also have hyperthyroidism and take a tablet for it once a day. I also have adrenal problems. Ever since I was a kid we've kept the shot around just in case. When growing up, they didn't make me take the pill you mentioned every day for it. I only took it when sick or hurt as my adrenal gland still has partial functionality. However, I guess it just wasn't doing a good enough job as I now take hydrocortisone every day, a tablet and a half total. I also have a couple other hormone issues, though not hyperglycemia.
Thank you very much
Thanks for telling your story. I have SOD myself and I don't know what I was tested for as a child. What questions do you suggest I ask my doctor? Should I get tested for these conditions?
Thanks again
Joe
I have septo optic dysplasia too.. Im blind in one eye
I. Have septo optic dysplasia, agenesis of the corpus callosum, ehlers danlos.. early menopause, sjogrens and a few others
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Emily, vitamin D started low with me and yes I’m on the pill and I have the implant both due to endometriosis, so my vitamin D was low through the floor so they put me on these super strong vitamin D tablets well now my vitamin D is far too high so I certainly don’t need anymore vitamin D.
Would you ever consider doing an update to this video/more videos on SOD? I find it so incredibly hard to find any good information and this video has been so incredibly helpful to me! ❤️❤️❤️
Hey Maria. I don't know if she is planning to do an update to this, but I did a video about my own SOD diagnosis which you can watch if you like. th-cam.com/video/cm7tg6b_x_o/w-d-xo.html
Hello maria. My daughter has sod. How much sight do you have?
@@hulyaakbayrak3586 oh hello! I have about between 10 - 15% sight ❤️
@@mariamaj3274 just one eye? Both of eye?
@@hulyaakbayrak3586 I’m completely blind in one eye and can see about 10% on the other eye ❤️
I also have septo optic dysplasia, but I can see pretty well from my left eye. I can play trombone by not reading the music but by knowing and remembering the slide positions and the notes each one made. That's how I can play by ear. 😉 I also love drawing. I know how to work on classic cars. I have known how to drive since I first drove go karts when I was a little boy. I've actually driven a truck around my mom's friend's property. I wasn't scared at all. It was as if the truck was part of me. I have an unusual dream for anyone with SOD. I want to run a hot rod shop. I wonder how I can somehow keep my dream alive when my whole family doubts me. The worst thing is my own mom doesn't understand me. I was just curious to know if you had any advice for me. I can ride around just fine on a bicycle, yet people think I can't drive. Anyway, don't be afraid to look past your disabilities. After all it's just a ball and chain trying to slow you down. I hope you stay positive and have a great day. Your friend in Spokane, Washington, Zach. ✌
The very last point I can relate to 100%. I have a rare life threatening chronic illness called Hereditary Angioedema. Basically, I am missing the protein that controls swelling and we can swell anywhere in the body. I have had many doctors try to do the wrong thing because they will NOT listen to me about my illness. The main thing doctors think is that it is an allergic reaction, and it is NOT an allergic reaction. So antihistamines (allergy medications) and epinephrine will not work for us. Sadly, I have known several people who have died because the doctors will not listen to us. And this all has been within the last 4 years.
I'm so sorry to hear that your having a difficult time making the Doctors understand where your coming from :( I can absolutely relate to this and its one of the most frustrating things. Because they make you feel as if you don't know your own body or have to right to speak up and say what you think would be best for you. But, honestly you are not alone and at the end of the day no matter how they make you feel aways remember this is your body and they don't know how you feel inside it. So, keep advocating for yourself because you have every right to xx
i have SOD too but im lucky that im not fully blind, but i have an eye thats very weak and it looks like i have a lazy eye. i was blind from birth and i dont know if i have other issues other than sight and spasms.
Hi lovely thank you for doing this video. At present I am really struggling with my daughter shes 8 has been diagnosed with sods. She is having issues with her behaviour at the moment and says when she gets upset her brain goes cloudy and she cant control herself. Is this something you have experienced and is there a way I can help her handle her emotions better? Thank you in advance for any advice. X
Hi Emily! I am Madison, and I am from South Carolina. I also have SOD, and hypothroidism. My optic nerves don't work in both eyes.
Lovely to meet you Honey x
I also have a growth hormone Deficiency.
Hi Emily. My name is Charissa. I'm 22 years old and I'm from the Netherlands. Your story is a bit similar to mine. I was diagnosed with a pituitary tumor called craniofaryngeoma at age of 15. The tumor had cysts that pressed on my nerves. In the end, my eye nerves are damaged and I see now about 1%. My pituitary gland is also damaged and removed. I have diabetes insipidus, diabetes type 2 and panhypopituitarism. So I know about the hormonal replacement therapie. How much hydrocortisone do you take? I'm glad to see that I am not the only one with this condition. Take care!
Charisma, I believe she said she takes 25mg a day 2 morning then the circadian way so say 10 at 6am is mine 4hours later then 4 hours later . Then she said if she needs to 5 extra if she needs it. Just to encourage you to make sure you are taking. Vit D3 daily. So you will have replacement so you don't suffer from arthritis young and are able to function., Remember your d.dosing when ill very important to follow your doctor. Hope your well. Lisa Kay
Same condition that's in my right eye as well
My daughter is 11 her vision went when she was little when we was told it wouldn’t , she has cortical dysplasia and SOD and midfacial hypolasmia
Hello, I know this video is old. I am wondering if you are missing the septum pellucidum and Corpus Collesum as well? I know they are all linked together. My son is missing those and I am wondering about this too, he is yrs old and has a lot of medical conditions. Thank you for sharing your story.
I’ve had sight issues since birth & have been to many drs, literally after 42 years I figured out why SOD, my Neurologist discovered it, along with seizures. My question for you is SOD qualify for disability?
Wow now I can give my frend a better explanation of my sod
I have the same condition!
This was really interesting, I know two people who have pituitary issues (but as a result of tumours). Do you find stressful situations difficult to deal with, I don't have a cortisol deficiency but still deal badly with stress and despise since cortisol effects stress do you find it effects you more. I know you mentioned the injection but is that just for really extreme things like car acident as you said, what about day to day anxieties and stresses. I myself have GAD but everyone gets aniexty around exams ect. Sorry I hope you dont mind me asking the question
+theboutique1 I do often find that stressful situations make it difficult for me to cope because of my condition. I also suffer with anxiety too so it often makes it a lot worse. I'm very stress with exams and have ben for years. I've even been sick in exams before because of the tress which is why I'm glad that my masters degree doesn't entail exams just essays. The injection is mostly advised for very stressful situations like injuries or severe sickness. They wouldn't advise me to have it for anything else as the does is extremely high.
Am 26 now and have the same condition! Anyone know of other channels, forums or discord to talk to people who have it?
I also take levothyroxine
Please can you tell me, our grandbaby was just diagnosed with s o d and she is also missing the septum membrane and pituitary gland. She was born with her midbrain in the wrong place. Is that the case with you?
I have septo optic dysplasia as well, and Diabetes Insipidus, hypothyroidism, low cortisol, low estrogen, and low growth hormone. I just found your channel and saw this video.
I was wondering how you handle the injections when you can’t tell how far from your skin the needle is. I started giving the injections to myself in the beginning of January, and I have had such a hard time with it. My mom just ordered me the injection where the needle isn’t showing but I was wondering how you do it
Miss Latte mine is one where you insert the needle into the injection and you press a button and it shoots into your skin. So you don’t have to worry about not seeing how far it is from your skin. It’s actually really painless and quick. The needle is really small.