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 wont 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 their blood sugar is low, then given them 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 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 Rachel 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!