Most of my followers are aware that I have an illness called Adrenal Insufficiency. Adrenal Insufficiency is a rare illness that affects adults and children alike. One of the biggest difficulties for me having AI is never knowing how much cortisol is in my bloodstream. If I take too much hydrocortisone I can get really unwell. If I don't take enough I could go into an adrenal crisis and die.
It is incredibly hard to figure out how I feel when unwell and to work out what dose I need to take when under extra stress. You see when your cortisol drops, it is hard to think straight and concentrate and sometimes I don't even realise I need more medication.
As someone whose health is never stable I need my husband to stay with me most of the time just incase. I can easily forget to take my medication, it is easily done, but for someone with Adrenal Insufficiency, forgetting a dose of steroids can be really bad. My head will start banging, my body will go weak and the dizziness will start. I won't be able to walk or do anything. I guess I'm really sensitive and if my husband is not there to check I've taken my meds then I will most of the time forget. I believe the short term memory issues and brain fog I get on a daily basis are directly due to my inconsistent cortisol levels. Just incase there is another reason for my memory problems, I have been referred to a Neurologist to rule this out.
It's easy to say get an alarm, however in the morning when I wake up with no cortisol in my system, I feel weak and zombified and cant even lift my arms to take my meds. My long term memory is fine but the short term memory is not. I may think I need my meds and go into the room to get them and by the time I walked a few meters, I will forget what I'm doing. So for me even when I have an alarm it does not guarantee I will take my medication. Thank goodness I have a loving husband who checks and helps me and makes sure I take my medication at the right times each day.
Sometimes I will whine and say I feel sick, my body is in pain, my head hurts, I'm dizzy, I want to throw up and my husband tells me, you need more medication. When I go into crisis, he injects me with an emergency injection which is life-saving and raises my cortisol to a good level once more.
If having Adrenal Insufficiency and taking medication is hard for me, then can you imagine just how difficult it would be for a child and that child's parents!
A child is less able to say how they feel and it can be even harder for the parent to work out exactly when their son or daughter needs additional hydrocortisone/steroid replacement. A parent would need to ensure their child takes all their doses. A child with AI, just like me is dependent on steroids to live. The cannot miss a dose.
Being a parent without AI and not knowing what it is like for the child must be very frustrating. It would be like telling a parent of a diabetic child to just watch your son or daughter and guess when they need an insulin injection.
Could you imagine this! Simply not being able to figure it out and having to guess. By the time your child is really unwell, with hypo adrenal symptoms it could be too late. Not knowing whether your son or daughter needs a top up or stress dose means they are going to struggle being under and over replaced with steroids and as a result have a poor quality of life and be at a greater risk of an adrenal crisis.
The photos in this post are shared with permission. These are of a child who has Adrenal Insufficiency. It's scary I know and something that parents whose children have AI have on their mind constantly every day.
Children do suffer with Adrenal Insufficiency. Over ten years ago Professor Hindmarsh (an Endocrinologist at Great Ormond Street Children's Hospital in London) started using diabetes pumps to help children who suffered with bad AI symptoms such as headaches and fatigue. He replaced the insulin with Hydrocortisone, the medication needed to keep AI patients alive and found that by slowly releasing cortisol into the body via an Adrenal Pump, in accordance with the natural circadian rhythm of the body, the child patient was able to have a much-improved quality of life.
Having a more stable quality of life is what any parent wants for their child. Ten years later, child patients who continue to struggle with Adrenal Insufficiency are able to be referred to Professor Hindmarsh and apply for the Adrenal Pump via the NHS. This is in no way an easy process and certain criteria must be met, however some children who need this pump are slowly getting access to it.
The problem however is that not enough research has been done and not enough Endocrinologists know how to work with the Adrenal Pump. There are children in other areas of the UK and across the world suffering when there is a potentially life-changing option available to improve quality of life for kids with Adrenal Insufficiency. There are also adults who could benefit from this treatment.
Not all children or adults with this condition suffer daily with adrenal symptoms. Some are very fortunate that the medication they are given works for them, however there are many children and adults that I know who do struggle day in day out and much more research and work needs to be done by medical professionals to help these people.
I have a good friend who has a child with Adrenal Insufficiency and has done a lot in the past two years to try and raise awareness about this rare condition. The more we share about the illness and the more people become that aware of the condition, the greater chance more research will be done to improve treatments for children around the world suffering from this Adrenal Insufficiency.
One of the harsh realities is that AI is rare and pharmaceutical companies would not benefit financially putting money and research time into an illness that they may not make a huge profit from. This is sad but true.
However I, like my friend will not stop sharing the seriousness and life-threatening nature of this illness. Adrenal Insufficiency can kill. It takes lives, it affects adults throughout the world, and it affects children too.
I wonder if the medical professionals and pharmaceutical companies would do more if it was their child suffering from the illness? Food for Thought!
Angela x
Angela,
Thank you for the informative article. I have 2 children with Primary adrenal Insuffiency, Addison's disease. I have been dealing with coritisol doses for 16 years. I so wish there was more that could be done for children & adults that live this rollarcoaster ride every day. Going through puberty and adjusting doses is always challenging. I am fortunate to have a good endo & pediatrian for my daughter age 13. My son now 23 handles his meds quite well, but still checks in with me when he isn't quite feeling well. He was diagnosed at age 7. We take one day at a time and I pray for a day when this illness is managed better than a guessing game and yours and their quality of life can be more predictable and stable. Wishing you good health...Debbie Walls
Hi Deborah, I can only imagine how hard it is for you to. It sounds like you've been managing the best you can for many years. Well done and to have two children with Addisons must be even harder. My hat goes off to you! I do hope to help spread the word on how difficult this condition is and hopefully one day we can all benefit, the adults, the children and those yet to be diagnosed. Angela x
Hi Angela!
Thanks for this awesome post. My 1 yr old has AI and I've often wondered how she feels when she is low on cortisol. If you don't mind me asking, what dose hydro do you take and at what times in the day?
It must be incredibly difficult for parents especially when your baby has AI! For me when low in AI, I feel dizzy, and have stabbing pains in my legs and generally feel weak and exhausted. I am currently on 30mg split up 15mg am 7.5 lunch and 7.5 at 5pm. I really hope to experiment more with my dosing schedule though as it's not working for me!
gee whizz that's terrifying. To think I had no idea of AI until I came across your post is just as scary. Thank you for educating me - it definitely needs awareness being raised x
Yes so many mothers have told me how worried they are when they send their children to school, especially in america where teachers are not allowed to give the child the emergency injection... which is crazy... but hopefully the law should be changing soon! Angela x
I can;t even begin to imagine how awful it must be, it sounds horrendous for an adult, let a lone a child! I have never heard of Adrenal Insufficiency, I am so glad you are making people aware of this.
It must be hard for children but even worse for a baby too! Babies cant even say when they are ill and the mother would be so unsure!
Sometimes it does make you wonder why the drug companies don't act. And yes, if they would if they were more closely affected. Here's hoping for progress with AI
Sadly they spend their research in areas where more people benefit but still we have lifes to live and it would help! Thanks for stopping by
these pictures are heart breaking to look at, no child should ever be like that 🙁 I have no heard of this before but it does sound quite scary trying or even knowing when to take your meds and how much to take. Its very sad that because it is so rare they will not push to much money into looking into this illness 🙁 x
They are heartbreaking but it is the sad reality. although I'm not a child i've been in hospital over 12 times in the past 24 months and it's a difficult thing for kids and adults. Hopefully they will help those of us who remain unstable and come up with improved treatment options.
You've certainly provided a lot of information. It sounds like an horrific illness, and as you say, terrible to see children suffering.
It's not a good illness...but it can be managed with the right endo and medication if they will just help us better!
This has certainly been an eyeopening piece - it isn't something I'd heard of before but it looks like a horror to deal with - I really hope that medicine does improve in the next years to come to make sure things like this become less of a harsh reality and more of an inconvenience by reducing the risks to life and allowing people a good standard of life.The pump looks promising, hopefully the system will improve to make it less of a headache to access services like this!
The pump is promising! I know a lot of women who use it and say although life is far from perfect it s way way better than before and although i've heard of one person who says it does not work for them, everyone else including parents of kids and adults say its wonderful and life changing. If only i were a doctor i could do medical research and collect the data and show the nhs myself the experiences of those using this device to live!
The photos look terrifying! It must be heart breaking as a parent the whole lack of control... 🙁 I hope your fight for a pump us gaining momentum and that the neurologist appointment gives you the all clear. I think it's great you continue to raise awareness xx
It is difficult for many of the mothers i have spoken to who do have children with AI. Some have managed for many years and are seasoned in living this way but for others it is a brand new thing and something they have to learn which will affect there lives for many years to come. I have to do something for these kids and share their stories! It's important.
I have never heard of AI before, so thank you for writing such an informative post and raising my awareness. It must be awful to have and watch a small child go through as well, hopefully it won't be too long before better treatment is provided.x
Thanks for reading and commenting. It is something to share awareness about and I appreciate your time to read this.
Is this the same as Addison's I have a friend that goes into crisis and her organs go into shutdown. She also has gastroperisis and has a pacemaker fitted. Well done for raising awareness about this harrowing disease.
Yes Addisons Disease is a type of Adrenal Insufficiency. It is a terrible disease and something for people to be made aware of more!
Oh goodness Angela, I really don’t know how you do all that you do with feeling downright awful on the days when your condition makes you feel like this. I have so much respect for you, and your husband because I honestly could not cope. To think that this affects children and looking at the images I just can’t imagine how the parents must feel. Thank you for helping to raise awareness of such an important issue and for being a bloody amazing woman xx
Thanks Amy. I just do my best when I can and when i cant I sleep lol. Hopefully things will get better eventually for me and the children with this illness.
I can't imagine what it's like to live with an illness like this. I suffer with an underactive thyroid and need meds for life, but the symptoms are a lot less severe. It pains me to hear that the research will not be paid for by pharmaceutical companies. A disease is a disease and if people are suffering they should try and fix it!
I agree more needs to be done and more medical professionals and companies need to help us. Angela x
I have to admit I`ve never heard of this condition before, it sounds absolutely terrifying whether its an adult or child suffering. I can't imagine how hard it must be for a single person with nobody to remind them or check that they're taking their medication at the right times. How scary.
Adrenal Insufficiency is not mentioned enough. tHanks for reading and I hope to continue spreading the the word about this illness.
My goodness Angela.
Thank you so much for sharing this post.
I hold my hands up and admit to never hearing about this before in my life. It sounds so shocking especially not knowing how to control it properly.
My heart seriously breaks for Rachel and anyone else who suffers from this or has a child that does. I can't even imagine always being in doubt like this everyday. You are amazing hunny
Again thank you for sharing Angela.
Charlotte x
that's the hardest part not being able to control the illness and not knowing when in the day I will be well or unwell and then having all the knock on effects of this! Thanks for reading.
Hi Angela, I don't know much about adrenal insufficiency, but from what you've written it sounds bad enough for adults let along for adults taking care of children with the disorder. I can't begin to imagine what it must be like knowing your child's life depends on medication and getting the right dose.... It can be bad enough administering everyday medicine like paracetamol!
You are a very brave lady and I take my hat off to you and your family.
xx
Thanks Debbie. I appreciate your lovely words. Sometimes i think why me...but then I think maybe this is a blessing in disguise because if i didn't get sick like this who else would push for better treatment and awareness! It's like I became ill to do this- in a strange way! Angela x
Oh gosh the poor thing and any child with this - I can't imagine how tough it is on the child and on the whole family too 🙁
It is hard for parents when they have not experienced it themselves and are unsure what to do.