Septo Optic Dysplasia: Living With a Pituitary Condition | Fashioneyesta
Greetings everyone, and welcome back to my channel. Today I have a slightly different video for you all today. Now, over the past few weeks I have been networking with a lot of different charities and organisations to do with sight loss, and pituitary conditions. And that has made me think that I would really like to sit down and film a video about me and my health condition. Because some of you might not know this, but I have a very rare medical condition that's also meant that I have sight loss.
But, for some reason, a lot of people seem to believe that my sight is the only thing that affects me, and that I only have a sight impairment. But actually that's not the case. My sight impairment is only the tip of the iceberg, and I have a lot more in terms of my medical condition, other than just the fact that I can't see very well. Now, this might not be of interest to you. If you're not really here for a video in which I'm going to explain my medical condition and living with a pituitary condition, then that's fine, you can totally click off and just skip this video, and come back when i do another one on fashion or beauty.
But if you're here for something like this, then this might be of use to you. And if you've got a pituitary condition, I would seriously think about staying to listen, because this might answer some of your questions, and if you have any concerns about it, then this might be of use to you. So I'll start off by saying what my condition is. It's quite a long one, it is called Septo-Optic Dysplasia. Some people just use the abbreviation of SOD, or De Morsier Syndrome. Septo-Optic Dysplasia is a very rare medical condition, and it has been said that only 1 in 10,000 infants are known to be diagnosed with it from birth. Septo-Optic Dysplasia is only one condition.
There's plenty of conditions that affect the pituitary gland, and the endrocrinology system. There can be quite a number of different health conditions in terms of the one, as a whole. So, basically, my condition has a lot of different things going on, other than my sight. But I'll start off with my sight to begin with, because that's probably what you know of me, that I have a sight impairment. I have something called Optic Nerve Hypoplasia, and the tissue around my brain is not there. So the part of my brain with the pituitary gland, the tissue that surrounds it is not there, and this has also meant that my optic nerves do not work, they are severed. So your optic nerves are the little veins that go from your eye to your brain, and then send little signals and impulses up to your brain, to tell you what they can see. But, in my case, the ones in my right eye, which is this one, they are completely severed, hence I am totally blind in this eye.
And the one in this eye, some of them work, some of them don't work, which basically means I have a very narrow depth of field vision. I have got only central vision, I have not got very far depth perception. I am very severely sight impaired. It's not gonna get better, it's not gonna get worse, it's just gonna stay how it is, which is cool, I don't mind.
And that is the first part of my medical condition. I also have what is known as a defect of my thyroid gland. Now, the pituitary gland as a whole is part of your endocrine system. It's basically the main hub, and it affects everything else in your body. So it affects your hormone production functions, it affects thing to do with your sugar levels, it affects your glands, like your thyroid gland, your adrenal gland. Of course I'll get on to this in a moment. But the first part of it is the thyroid gland.
Now, what your thyroid basically does is it produces the hormone which will help you in terms of fighting off diseases, with immunity, it will help you in terms of regulating your blood pressure. It will help you in terms of your weight, and making sure that you stay at a healthy weight as well And I have an under-active thyroid gland. My thyroid does not make enough of what it needs.
So I am on replacement therapy for that. And that is the first part of the hormone functions that don't work in my body. Second to that, my adrenal gland doesn't work. Now, the adrenal gland is based just above your kidney, and it's the gland that affects things like your adrenaline, and it also affects my cortisol levels. What cortisol is, it's a very, very important hormone that the adrenal gland makes. And what this does is it helps you with your sugar levels, it helps you to stay at a healthy temperature, it helps you with blood circulation and blood pressure. But I don't make up enough, again. So I need the drug which is called hydrocortisone.
And what this does is it makes sure that I have enough cortisol in my body to help me fight off immunities, to help me fight off diseases, to help my blood pressure stay regulated, to help my sugar levels stay at a good rate. And without it I would basically flop. I would not be able to function if I didn't have hydrocortisone in my bloodstream. And second to that, what it also affects is the hormone that makes growth hormone. Now, growth hormone is something that we all need throughout life. You don't just need to have it when you're young, you need to have it through later life to help you with things like bone density, sugar levels, when you're pregnant you need it. It is something very vital to your functioning, so don't think it's just something you need when you're young. I've never had enough of this hormone.
The doctors said that I needed to go on growth hormone, You can have it in either a nasal spray format, or an injection. I personally take the injection, and I take this every day. When I was younger, it was to try and help me grow, but I had it too late, I'd missed the window. So I never really got any taller. But what it does to me now is it makes sure that I've got enough growth hormone to help me with my blood sugar levels, and my immunity levels. People who are on hormone replacement therapy usually have a low amount of Vitamin D in their system, and Vitamin D can really help your bone density.
So I am on that to make sure that I have enough growth hormone to help my bones stay stronger for later life. All the drugs that I'm on, all of my hormone replacement therapy, makes sure that my body can act like your normal body would. So, if you're watching this and you don't have a pituitary condition, then you have all the functions that I don't. But without the drugs that I'm on now, I would not be able to function in the same way, and it would really affect me. Now, when I was younger, my body was just not working very properly, because I wasn't on all of these drugs, because when I was first diagnosed, little was known about this condition. It was very, very, very rare, and at the time people didn't know how it would affect me. They didn't know if I would have any cognitive problems, learning difficulties, didn't know how much I would be able to see, whether I'd be totally blind, and it was a really troubling time.
Now, growing up I was always quite bright. I had the ability to learn things, I was very articulate, I loved to learn, and I really did excel in that department. I mean, my sight did affect me in some aspects, when it came to learning the mobility, but when it actually came to book smarts, I was very clever. Now, the other thing about my condition was that growing up I was always ill, because I wasn't on growth hormone replacement therapy, I wasn't on thyroid tablets, I wasn't on cortisol tablets, until I got to a later stage in my life. I think I started on hydrocortisone when I was about 6 years old, and before that, I was literally in hospital pretty much every week. Every week, in hospital, at my local A&E, because my body was in shock, because I didn't have the cortisol in me to actually help fight off immunities, or to help with anything. So literally I could just bang my head, I could knock my arm, I could fall over, I could have a virus, and my body would just go into absolute overdrive, it would not work, it would be total pandemonium in there.
And it would be right, down to hospital, you have to go on a drip. When I got a bit older, I had a lot of blood tests and overnight blood tests, to see what was going on. How much cortisol I was making throughout the night, how much cortisol I was making in the morning, how much thryoxine I was making, and it came apparent that I needed to be on quite a high dosage, to make sure that I was going to, you know, be able to fight off immunities, and to actually, you know, get on and stay well. So, as I've gone on through life, I've had to have blood tests all the time. Every year I have to have blood tests to make sure that my cortisol levels are at a good rate, to see if I need any less, any more.
Because if you're not on the right amount, you can get a lot of things, like you can put on weight, you can get ill, you can start to suffer with blood circulation problems, and it's really important that they make sure that your cortisol levels are at a good system. Now, when I got on the right dosage, I started to recover, but I'm not gonna lie, I still have days, even now that I'm 20, I have days where I don't want to get out of bed, that I still feel ill. Or I have days where I will take my hydrocortisone in the evening, I'll get up the middle of the night and I'll still have blood sugar low attacks. And this is another part of my condition, that I have something called hypoglycemia. If you're diabetic you get this as well, but you can also get hyPERglycemia, which means your levels go up. But in my case, my blood sugar levels just go low.
Now, this is a concern because I have to eat quite a lot throughout the day to make sure this doesn't happen. And this is all to do with the fact that I have low cortisol levels. Now, sometimes in the past I've had a tablet, I've gone to sleep, I've woken up in the middle of the night, and I've had a hypoglycemic attack. And this is quite scary, because that then means that I'll get up in the morning and I will feel like crap. I will not be able to function for the rest of the day, I will be cold, I'll have shaky hands, I'll feel like I'm going to be sick, I will not be able to concentrate, my eyesight will go really blurry. All these symptoms that you get with a normal hypo attack or sugar lows, I get pretty much, you know, when I wake up in the mornings some days, when I've had a hypo attack in the middle of the night.
And, if you've not got a pituitary condition, it can be very hard to understand. Because when I was growing up, I would say to people I have not felt well for the last few days, that's why I've not been in school. No one would get it. No one would get why I was off for so much amount of time. But unless you're in that situation yourself, you don't get it, because pituitary conditions are so rare.
Unless you've got the right people around you, or the right doctors, you're not necessarily gonna know how to cope with it, and what is normal of the condition. I mean, now I know what my what my body does, what it needs, what it doesn't need, that's only come from experience of 20 years. Pituitary conditions are so, so complex. They can be totally different. One person might be like me, one person might be like someone else. You might get someone who's got autistic tendencies, because it affects that part of their brain, and that part of their cognitive system. And there's just no exact model for how someone's gonna be when they've got the condition. It's not like someone who maybe has something like RP, for example, which is a retinal problem with your eyes, or who has a condition like that, or diabetes.
With pituitary conditions, everyone's completely different, and you can't put the same person in the same category. Not only that, I to you may look like a very well person. I am not gonna lie, there are awful days, there are days where I feel absolutely terrible, there are days when I think I just can't do this any more, I hate my condition, I can't stand the way it makes me feel.
There are other days when like, oh my god, I feel great, I've had all my multi-vitamin pills, I feel like I can conquer the world today, I feel fantastic. It's just one of those things, unfortunately. You just have to remember that that is normal. When you have a pituitary condition, you do feel like that. You just have to help it along. You have to eat the right things, take the right tablets, ask your nurse what vitamins you should be on, Something else I want to talk about with you guys is called adrenal crisis. So what this basically is in a nutshell is - say for instance you bash your head really badly, you're in a car accident, you fall down the stairs, you break a limb.
Anything like that when you've got a pituitary condition, your body will go into something called adrenal crisis. Now, this happens because your body can't make enough cortisol to deal with the stress of it. Because that's what your adrenal gland's there for, it's to help you with stress. And your body will just go "Woooohh! What the hell's going on?! Let's try and sort this problem out! Oh my god, pandemonium, aaagghh!" You might have something called a hydrocortisone injection, which you carry around in a medical kit. And what you need to do, is you need to get this into your body straight away. Now, you need to do this ASAP, because it is so important for someone with a pituitary condition, because they need that in them to help their body deal with the stress. So, either someone who is a medical professional, like a paramedic or a doctor, needs to give it to you, or someone who's been trained.
But you never put this in the vein, it always has to go in the muscle. You have to go through the procedure of making sure there's no bubbles in there, and it has to be in there straight away, you cannot deal with this. You have to quickly get it in there, because without it, it might get very serious. They might end up having an epileptic fit, or in the worst case scenario they might even have a coma, and it leads to fatality. That is how serious it is, that is the cold reality of it. So, you need to be aware that your body, when you have a pituitary condition, is very sensitive, and you need to treat it with respect, and make sure that you know exactly what to do in a crisis, and that people with you who you know, like friends and family, know and are aware of this. When you have an adrenal crisis, what you should usually be on is something called an ambulance protocol. I myself am on it.
The ambulance are aware, if you come in and call them, and say that this person's having an adrenal crisis, this person's got this condition, which is an endocrine problem, they need to be there within, like, 2 hours, you know, maximum, absolute maximum, and they need to be aware that this is a very serious case, and it can lead to fatality if it's not treated right away. So something else I just want to point out is you should have something like this. This is a medic alert bracelet. What this is, is it's a bracelet - you can get lots of different designs, you can get sporty ones, you can get fancy ones like this, you can get just normal little thin silver chain ones. This will have a little icon of a snake. On the back, it will have a list of your important credentials, with your medical condition. And an ambulance paramedic should look for this, because this will tell the person some of the key facts they need to know.
And it will also have a number on the back, so that they can ring up medic alert, and give them this number, and they can get immediate information on the person's condition, and how to treat them. You can get one if you're diabetic, if you have got an asthma condition, any rare condition, you should have one of these. But very much so if you've got a pituitary condition, because it is so important. I personally would have two, just in case the other one breaks. Over the past, I've been looked after by two very amazing hospitals, the first one being Great Ormond Street when I was a child, right up to the age of around 14, and then from that point on I was looked after by the UCLH hospital in London, and they have both been fantastic. And it's so frustrating sometimes when you go to your local A&E, or an A&E that's outside of the borough, and you try to explain to them what your condition is, and what they need to do, and they don't know what they're doing. And the doctor comes in and thinks they now best, and that they need to do this, this and that, or they need to give you this, or this medication.
And you're like: "Actually, no. You need to find out about my condition, before you do anything to my body yet." So I can completely relate to people who have said this to me in the past, that they have had really bad experiences with hospitals that don't them very well, or who are not their specialist hospitals. It is frustrating, but you need to be firm, you need to be assertive, and you need to tell the doctor that they need to be sure what they're doing. Because, with all due respect, they don't know about your condition, and they're not an endocrinology expert, and this condition is rare, and they need to make sure that they know everything before they start handling your case. So guys, I really hope this video has been interesting to you, and you've got some useful information out of it. Don't forget I will happily do more videos on any of the topics I've covered, like adrenal crisis, if you want me to, you just have to comment below and tell me. I'll also be putting loads of links to different places you can go for more information down below, if you want to find out more information on anything that I've mentioned today. Thank you so much for watching, and I'll see you guys next time.
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