What is Hypopituitarism? Explaining My Illness (Septo Optic Dysplasia) | Fashioneyesta

[@aimesfin05]

These videos are so comforting to me because I have the exact same thing and I’ve never met anyone else with my condition , thank you so much for making your videos 💗

[@hajrahr]

I have this condition too-

[@JixieDyeAuthor]

I have it tooooo HI!

[@grahamdennis2810]

And me not good feel terrible all the time

[@yeevanieshepherd]

Me too

[@NerdSista1]

same, I have all four conditions that she mentioned towards the end plus I'm blind in my right eye due to being born without an optic nerve there.

[@Verszip]

this helps me a lot i ' m a 17 year old boy i have hypoputiarism i have the bone and growth state of a 13 year old i have a lot of medicine such as levothryoxine , hydrocortisone and i take thyroid and growth hormone injections the reason i went to the doctor was cause my body hasn't grown i was 4,11 at 16 year old and i was being bullied because i was really small i recently went to the doctor and that's when i got diagnosed

[@MrBeav1018]

Am i so glad to see you and your video. i to have hypopituitarism. and hypo thyroid i have been dealing with since i was diagnosed in 1986 . I have been trying to tell my employer why i miss so much work but she and the rest just roll their eyes and shrug their shoulders. i also have hypoglycemia an asthma. I was on Growth hormone for 6 years. thankyou for your video.

[@r3d_drag0n70]

This video was very well done. In my own personal experience I was one of the youngest patients to be diagnosed with hypopituitarism and Septic-Optic Dysplasia at only three weeks old. I have definitely struggled with many of the symptoms you mentioned and have been on hormone replacement therapy and growth hormone since I can remember. On top of these my condition has manifested in renal problems and trouble breathing but the treatments keep these under control. I’m glad someone like me is able to raise awareness and inform others about these conditions.

[@FlyKiwi]

Hey! I also have hypopituitarism and ONH! I grew up never knowing anyone else with the same illness but it's so cool to find other people online.

[@FlyKiwi]

Adding responses as I watch: So I had what they thought was squint when I was born. I had surgery to straighten my eye but it wasn't until I was 5 and started trying to read and write that they realised I was half blind.

[@FlyKiwi]

I had an MRI at age 7 because I was shorter than my 4 year old brothers and they knew about the ONH, I don't know if the two were linked yet? I started HRT at age 7 and kept it up until I was nearly 17, I think having it for so long is what made me reach 5ft3, a relatively "normal" height

[@racanijs]

For good absorption of your vitamine D, i would say magnesium is essential. 🙂

[@melissamiller6182]

I got diagnosed with this ❤ and addison's disease

[@JasmineBresnihan]

I live with the same this and it is so great to know your not alone (hypothyroidism )

[@ecologist_to_be]

Amazing how one gland can cause so many symptoms! Sounds really challenging to manage! Just want to tell you in your subtitles thirst changed to first & underactive changed to undirected xx

[@fashioneyesta]

Thank you x

[@jasminebambury5841]

Love your hair colour and curls. Great video. Very informative.

[@fashioneyesta]

Thank you so much!

[@ramonashearer7241]

Thank you for this video! I was diagnosed with adult onset hypopituitary. In searching for information over the years I never found anything that explained it so well.

[@andrewwhitelegg9460]

Great Video 🙌 I was Diagnosed with SOD at 6 months old and can relate to the issues you talk about with confidence, I look forward to future posts 👍

[@fashioneyesta]

Thank you so much xx

[@hulyaakbayrak3586]

Hi! How is your sight? Colours, close or long distance? My daughter has sod. 😔 can you read book easily?

[@toniedudley6593]

Hi Emily Great video x I have underactive thyroid and I'm hyperglycemic. Everyday I have to watch what I eat I struggle to hold down food I do take meds I have bad reflux and I'm waiting for my Gallbladder to be taken out I have Gallstones and I'm visually Impaired I wish my health would get better . My body aches always in pain I try to exercise which I love. I've never really tell anybody what I go through each day I like to stay positive and happy . I have meds for allergies.

[@danielledewitt1]

Tonie Dudley They told me once I had gall stones but for ages did nothing about it. Then eventually they removed it. Next go was my right eye then my appendix was removed.

[@asecretcourtofcrowsandcloc4084]

This was a very interesting video Emily. Thanks so much for making it. You do a really good job of explaining it and giving analogy that is easy to understand

[@fashioneyesta]

Glad it was helpful!

[@richardstone5552]

It's hard to get my head around some of those although you explain it so well it's just there's so much But thanks for sharing you look amazing as always sweetie xx

[@fashioneyesta]

Thank you xx

[@richardstone5552]

Your welcome I hope you're well xx

[@Lookfortruth7]

Was born with this and adrenal insufficiency. Struggled with taking meds all my life due to personal issues etc. Hard being different and can be very depressing. We got this tho

[@aikiakane]

I also have S.O.D. and it's always interesting to see the similarities and differences among those of us with this diagnosis. I love how you always explain things in such a concise, easy-to-understand manner for those who don't live with these conditions! Please stay safe and keep doing amazing things. I look forward to more content!

[@fashioneyesta]

Aww thank you x

[@hulyaakbayrak3586]

Hi! How is your sight? Colours, close or long distance? My daughter has sod. 😔 can you read book easily?

[@haleydoe2279]

Im 4'9". I was 4'11" until my spine crapped out.

[@ruralrehab]

Hi, thanks for this video! It would be amazing if you could do a video interviewing your parents. What was their experience? Were you delayed in your development? What were their worries? Any advice they would give to their past selves? Was placing you in a school a problem?

[@tudormiller887]

I'm a brand new subscriber watching from London.

[@joshscritchfield693]

I took growth hormone shots since I was 3 until I was 18 and I take all the same meds you do but I’m also on testosterone injections because my bones are super week and I have osteoporosis and I’m only 37

[@naz5982]

Thanks very much for sharing !

[@naturewoman1274]

Hi there I have hypopiturityism and hypothyroidism and adrenal insufficiency too I was on hgh as a child I'm 4ft 10

[@louisepianokeyz2860]

Brilliant video Emily x

[@fashioneyesta]

Thank you x

[@MartintheMetalhead]

Iv'e had it since i was 5! Hydrocortisone is what I take as a tablet. Plus Thyroxine that people who have had their thryoids removed.

[@Butterfly-Garden-254]

Same! I've had it since I was two, it's so hard to meet other people who take hydrocortisone and levothyroxine as well.

[@Theslboutiquellc]

I have exactly what you have omg I’ve never met anyone like me before. I’m also 5’1 and was on GH for 10 years. Please tell me how you deal with fatigue? I take the same meds plus birth control since I don’t Menstruate and an antidepressant

[@Zahraa-awada]

I have hypopituitarism too since 12 years, I was prescribed at the age of 18. It was due to a tumor on the pituitary gland, I did a surgery to remove the tumor and after that I've been taking permenant medication. The growth hormone treatment was useless as I reached 18 years old and so my height is 146cm only. I was still given growth hormone though because it is necessary for the body, but it caused so much water retention in my body that in one month only, I gained 10 Kgs and so I stopped it.

[@fernlulham8837]

I have nystagmus too! This was really interesting, Emily. It's lovely to think that a parent of a child with your condition could find this and see what a positive, lovely person you are and how much you have achieved. That could change their perspective on everything. ❤️ xxx

[@fashioneyesta]

Aww thank you so much! xxx

[@joshscritchfield693]

I have hypopituitarism I was born with it it runs in my moms side of the family the women carry it and pass it on to the second born son it’s really weird!

[@danielledewitt1]

Good afternoon Emily.

[@RB-pg5nu]

Sadly but i am one of those who has hypopituitarism.. i take 2 medications same as u hydrocortisone and thyroid.. do u take levlin as well for ur cycle? Also i wanted to ask my doctor also asked if i am wanting to take growth hormone injections but i am afraid if it may cause other side effects on my body. So how long have u been on growth hormone injections and have u noticed any side effects? And is it too hard to take?

[@InspirationEmPire25]

Hi Emily. My name us Emily too. I have Hypopituitarism. Adrenal Insufficiency and Hypothyroidism, Optic Nerve Hypoplasia buy not sure if I have Septo Optic Displasia, but I was wondering what happened to you that caused it. I have an Erachnoid Cyst that caused mine.

[@lawenjawhar6102]

Any one here with Hypopituitarism that Caused them not to produce any hormones at all? I was diagnosed when i was 13 years old and done some ultra sound and hormone test so my uterus was so small also ovarian and no breast ! And no period of course now Im 22 trying to have a baby but sounds impossible and done out first ivf was also failed.....

[@dawnegan9347]

Very rare to come across someone else with hypopituitarism.. I'm 34 and was diagnosed at 14. Was originally diagnosed at 8 with a growth hormone condition. I take the contraceptive pill, hydrocortisone, Eltroxin and genotropin ( growth hormone). Unfortunately I'm infertile and fertility treatment failed. Does anyone else have issues with fatigue even when bloods test say you're within range? I also experience low moods and anxiety.

[@nidatariqb]

Same. It Sucks. But I’ve got hypopituitry autoimmune issues, and had it surgically removed because of headaches at 25 years old ugh

[@nidatariqb]

I get food coma! Sleepy in the morning I feel sleepy at random times and now switching up my diet because perhaps carbs are a culprit

[@lawenjawhar6102]

Hello i have the same condition can u tell me have you ever done ivf ?

[@kirstenbusby-soprano]

I also live with Septo-Optic Displasia

[@fashioneyesta]

Hello to another fellow person with SOD!

[@kirstenbusby-soprano]

Hello, it's nice to know that there are other people living with the same condition.

[@hulyaakbayrak3586]

Hi! How is your sight? Colours, close or long distance? My daughter has sod. 😔 can you read book easily?

[@kirstenbusby-soprano]

@@hulyaakbayrak3586 easiest Way to explain mine is I am a braille and screen reader user, so I’m not quite completely blind, but pretty close. As for reading, I tend to read Eva braille books if I need to be able to comprehend things, but if I’m just reading for leisure, I usually read audiobooks.

[@hulyaakbayrak3586]

@@kirstenbusby-soprano thank you for answering. I hope my daughter would be fine.

[@aqpauraqahsoak7371]

What kinds of emotional stress would warrant more steroids?

[@fashioneyesta]

Things like a severe anxiety or panic attacks. But I’m always advised to discuss it first before increasing my steroids.

[@lep8622]

They blame my hypo pituitary on Sarcoidosis. I

[@To_His_Glory]

Has anyone noticed that their symptoms get worse during the hot months?

[@fashioneyesta]

Absolutely

[@To_His_Glory]

@@fashioneyesta thank you for your reply! It helps a lot :)

[@malianiland7541]

POV: you have this condition

[@LilXancheX]

You have an adult voice and appearance. I don’t think you have it

[@dr_nasr0003]

Amazing