If asked to take the cocktail-party challenge and explain Addison’s Disease in a single entertaining sentence, I would say “my adrenal glands were damaged during a knife-fight with Mr Addison.” [Insert pause for laughter].
I’d then proceed to say “yep, I’d never heard of Addison’s Disease before diagnosis either. This is the disease that gave John F. Kennedy his lovely tanned appearance. Unlike JFK, I unfortunately can’t afford a team of doctors on staff keeping me alive so there will be no presidential-run from me.” [Insert pause for more laughter].
Laying it down in lay-terms
The method that I use to explain Addison’s Disease to most people is by reference to Type 1 Diabetes. As these two diseases share many similarities, I can hitch a ride on people’s familiarity with Type 1 Diabetes.
Like Type 1 Diabetes, Addison’s Disease is a permanent, life-threatening condition. Both require taking daily medication in order to stay well and alive.
Whereas someone with Diabetes has a damaged pancreas, my adrenal glands are broken.
Whereas someone with Diabetes takes multiple injections of insulin each day, I currently take steroid tablets 6 times per day. My doctor is actually looking at putting me onto an insulin pump for my steroids (stay tuned for updates on this).
Whereas someone with diabetes needs to monitor and manage their sugar levels, I need to carefully manage my stress levels. If I experience high levels of stress, I need to take extra medication or go into to hospital for treatment.
Sometimes I get to the end of my spiel and people ask me “so you have diabetes then?” *Sigh*.
An alternative, perhaps more entertaining approach, would be to utilise my pirate ship metaphor. It would go something like this:
If you imagine that my body is a pirate ship, then some of its crew has gone on a drunken rampage. These mutineers have sabotaged my ship, blasting holes in its hull. (My immune system has attacked and damaged my adrenal glands).
Water quickly streams in through these holes, threatening to sink my ship. (It is a life-threatening condition). As it’s not possible to replace the whole hull, these holes need to be continually patched up with planks of timber. (I need to take daily medication to replace what my adrenals can no longer do).
If I sail my pirate ship too hard, these patches will buckle under the strain and my ship is at risk of sinking. (If I experience high levels of stress, I am at risk of becoming deathly ill).
Occasionally, I come across someone who wants or needs to know all of the gruesome details about Addison’s Disease. This has been yoga teachers, therapists, pharmacists, and close friends and family. These are my 5 talking points about Addison’s Disease:
1. Addison’s is a rare, autoimmune disease.
I’ve calculated that there are only 1000-2500 Addisonians living in Australia. In the 4 years since diagnosis, I’ve met one other person with Addison’s Disease face-to-face (would you believe an assistant, working at my local chemist). I’ve communicated with perhaps a hundred others on social media.
“Stop hitting yourself” from It’s a Mad, Mad, Mad, Mad Marge episode of the Simpson’s, Fox TV
In 80% of cases including mine, Addison’s Disease is caused by autoimmune processes. This involves the immune system attacking the body’s healthy bits as if they were a disease that needs to be fought off. “Stop hitting yourself” comes to mind.
If the immune system damages the adrenal glands it’s called Addison’s Disease, the pancreas is Type 1 Diabetes, the thyroid is Hashimoto’s Disease, the intestines is Coeliac Disease, the skin is psoriasis, the joints is rheumatoid arthritis, and so forth.
In the other 20% of cases of Addison’s Disease, the adrenal glands are damaged by cancer, infection or tuberculosis.
2. Addison’s Disease causes a range of weird symptoms.
Over 18 months prior to diagnosis of Addison’s, my failing adrenal glands caused havoc throughout my body. My signs and symptoms were textbook Addison’s Disease:
- Episodes of extreme fatigue accompanied by nausea and chronic headaches not relieved by pain killers.
- Susceptibility to picking up colds and viruses.
- Sudden vomiting.
- Excessive sleeping (14 hours per night).
- Dizziness (particularly during heated yoga classes).
- Loss of appetite and associated weight loss of 10kgs.
- An overall darkening of the skin (I appeared deeply tanned) with bruise-like marks on my knees and elbows.
- Chest pain and weakness on standing up.
- Cravings for sports drinks, salty foods and lollies.
- Brain-fog (difficulties with memory retrieval, multi-tasking, speed of processing and maintaining concerntration).
- Excessive sweating, and feeling overally hot or cold.
- Loss of sex drive.
- Irritability, agitation and teariness.
Why I wasn’t diagnosed sooner is a story for another time.
3. Addison’s Disease involves permanent damage to the adrenal glands.
In order to receive a diagnosis of Addison’s Disease, the adrenal cortex (outer part of the glands) must be so damaged (80-100%) that it can no longer sustain life. Like me, most patients with Addison’s Disease are diagnosed in hospital, on their deathbeds after months or years of unexplained symptoms.
Due to Addison’s Disease, my adrenal glands no longer produce the hormones:
- Cortisol: regulates sleep, appetite, blood sugar levels, energy production, and immune function. Helps the body to survive stressful events.
- Aldosterone: balances electrolyte levels and blood pressure.
- DHEA: a woman’s source of testosterone which impacts sexual function, muscle strength and wellbeing.
I still produce adrenaline because it’s made in the inner part of the adrenal glands which is protected from autoimmune attack.
Yes, I experience adrenaline rushes and feel stressed but now stress can kill me (no really).
You are probably wondering what gave me and JFK our banging skin tans. When the adrenal glands start to struggle, the brain identifies that less cortisol is being made and it sends messages to the adrenal glands to tell them to work harder. This message is a hormone called ACTH. The more the adrenal glands are failing, the more ACTH is produced. When high levels of ACTH accumulate in the body they apparently reflect the light and give the appearance of having a tan.
4. Addison’s Disease is treated with replacement steroids.
Unfortunately adrenal glands cannot regenerate or repair themselves. There is no adrenal gland transplant available. And before you kindly offer a story of how your adrenal problems were cured, Addison’s Disease is not “adrenal fatigue”.
Adrenal fatigue is a hypothetical condition unrecognised by science or medicine. Alternative health practitioners claim it is treatable through a paleo diet, avoiding caffeine and lifestyle changes.
My damaged adrenal glands cannot be regrown by eating more meat, taking “adrenal support” supplements, practicing chakra-opening yoga poses, chanting or doing something (?) with essential oils (all actual suggestions that I have received).
The only (safe) treatment available for Addison’s Disease is replacing the missing hormones with synthetic versions. The synthetic version of cortisol is hydrocortisone, and the synthetic version of aldosterone is flurocortisone. In Australia, DHEA can only be made and purchased through a compounding pharmacy.
These medications are steroids. [Insert pause for panic about how bad steroids are for the body and the need to stop taking steroids as soon as possible].
You may be thinking of people you know with asthma, arthritis or even a different type of autoimmune disease who take steroids and experience horrid side effects. These people take a relatively high dose of steroids to obtain anti-inflammatory benefits (up to 100 times the dose that I take). I take the base minimum dose to replace natural production and to stay alive.
5. Addisonians are at risk of potentially deadly adrenal crisis.
During times of high stress (e.g. injury, serious illness, surgery, psychological distress), the adrenal glands usually pump out huge amounts of extra cortisol.
Health magazines have unfairly painted cortisol as being the evil stress hormone that causes all manner of ills in people living fast lifestyles. However, cortisol helps our body to cope during times of crisis and keeps us alive. Problems only arise when crisis becomes our daily lifestyle.
During a crisis, cortisol plays a vital role in keeping the body’s systems stable and ready for action. For example, it increases blood pressure to minimise the risk of fainting, and increases appetite to ensure that the body has sufficient fuel to power through the crisis.
With no natural cortisol production, my body is at risk of shock, coma and death from stressful events. This situation is called an adrenal crisis.
To prevent an adrenal crisis, I need to take more steroids during times of stress. For a small stressor like starting a new job, I take an extra tablet. For a major stressor such as being in a car accident, I would need to inject myself with a shot of hydrocortisone and receive IV hydrocortisone in hospital until stabilised.
Gastroenteritis is a particularly high risk event for me because not only is this a stressful event, but it also impacts electrolyte balance (remember, I don’t produce the electrolyte balancing hormone aldosterone) and it interfers with my ability to keep down extra tablets. If I start vomiting, currently my only option is to go to hospital for IV hydrocortisone.
What is Addison’s Disease again?
I’ve learnt that although Addison’s is a disease that no-one has heard of, it manages to cause a deal of confusion (“so you don’t make adrenaline, that’s ace, no stress”), misunderstanding (“oh, I had adrenal fatigue too and I cured it with a paleo diet”) and/or controversy (“steroids are bad for you, you should get off them”). Perhaps I’ll stick to talking about pirates.
Look out for my future blog posts about why the skinny-tanned disease took 18 months to diagnose and my rewrite of the traditional Addisonian treatment fairytail.
These articles expand on topics that I’ve written about today:
These websites are full of helpful information about Addison’s Disease: