Actor Dan Stewart is passionate about raising awareness of Addison's disease since his own diagnosis in 2008. Here he shares with us his recent emergency hospital admission experience and gives advice on how to be prepared for emergency situations.

I was diagnosed with primary adrenal insufficiency (Addison’s disease) back in 2008 after a lengthy period of being very unwell. I had lost 10 percent of my body weight, could barely eat and was struggling to walk up stairs. It should have been picked up sooner as I was already seeing an Endocrinologist (in New York, where I was living at the time) for Hypothyroidism (Hashimoto’s disease).

We messed about for a year changing my medications before finally being diagnosed. I’m an actor and my job makes huge demands on my non-existent adrenals! I had already had two hospital visits and was beginning to black out on stage so it was really quite far progressed. Since that time I have only had three adrenal crises.

The Crisis

Then late one night back in September of 2022 I began to feel really unwell. It was a familiar feeling although not accompanied by vomiting for the first time. What was frightening is how quickly I became unwell. To the point that I was no longer able to use my emergency injection as my hands were trembling so much. Fortunately, my wife was able to help and injected me even though it was a first for her. We were so concerned that we called an ambulance which was also a first.

The paramedics were very prompt given that we live in quite a remote countryside. I had registered with South Central Ambulance Service so the paramedics showed up with more hydrocortisone which I was grateful for as I was still feeling very poorly.

I had already assembled my emergency kit (including the used vial of Solu-Cortef), my regular meds in case I was there for longer than a few hours and my steroid emergency card so that any medical professionals would be in no doubt as to what I needed and when. The paramedics were incredible and very kind.

The Hospital

However, for the first time, I didn’t have a great experience at my local hospital which has always been exceptional. It took a while to be admitted but the paramedics stayed with me. I was finally brought into triage and promptly left for quite some time. A nurse eventually stopped by and said that a doctor would be by when he could but that it was very busy at the moment. I made it extremely clear that I needed 100mg of hydrocortisone IM stat and a drip of sodium chloride. You know your disease and your body better than anyone. Being firm but polite about what treatment you know must be administered is not being pushy. 

That is another reason why the Emergency Steroid Card is so important! “If you don’t believe me, read this! It’s from the NHS!!”

The Treatment

I was wheeled from triage to a screened-off bay in A&E. But now I was happy as I had my drip and the additional hydrocortisone. This had taken roughly three hours already and it was now around 3am. I was tired and still not feeling great. However, I felt safe and knew that the medical professionals were on top of things and aware of what kind of care I needed. I was eventually discharged at around 10am the next day. Exhausted but alive. Our fantastic NHS is under tremendous strain at the moment and the doctors and nurses are doing their best under extraordinary conditions. So I never begrudge how long it takes to be admitted and how much longer it takes to be discharged.

Be Prepared

Things happen very quickly when an adrenal crisis hits. It has always been out of the blue for me and, fortunately, always when I have been at home and have access to not just medications but family to help. Weirdly I survived COVID and food poisoning without it triggering an adrenal crisis. But then one random Thursday night. You just don’t know when it might hit.

I always wear a medical bracelet with not only the names of my conditions but also the medication I take, my name and an emergency contact. The bracelet or necklace is a must. Never be without it. I always carry my Steroid Emergency Card and I keep an emergency injection kit in my car, at home and in my satchel that is always with me. Also, when I go on holiday I carry a letter from my Endocrine Unit that explains why I have a syringe in my carry on bag! 

I am never without my medicines. Taking them has become such a ritual as soon as I wake up that I sometimes can’t even remember doing it! I count them and realise I almost took them without being properly awake! After much trial and error I now take Prednisolone as I did not get on with Hydrocortisone. Weird, but it works for me. I take 5mg a day and double if I’m doing anything really strenuous or if I’m sick. During COVID I took a triple dose for four days then double till I felt better. Doctor’s orders.

It is so valuable to know what to do when a crisis hits and that your family and friends also know what to do. Even my entire cricket team knows where my injection kit is. They can’t wait to stab me with it! I bought a very small plastic box to hold my injection kit for when I’m on my motorcycle. Probably the most foolhardy of my hobbies.

Finally, know your body. You will know when things don’t feel right. Take an extra dose and make sure you know where your kit is. Don’t be ashamed or embarrassed to say you don’t feel well. I once told my cousins, who I annually do the Three Peaks with, on top of Pen-y-Ghent (I made it down)! And maybe most importantly, know what you’re going to do in case of an adrenal crisis. Know where things are. Know what you need to tell medical professionals. And don’t be ignored! Be firm but polite. Chanel your inner Holby City! I’m not a doctor but I have played one on TV!!

Author: Dan Stewart To hear more from Dan, follow him on Twitter @dnstewart67

Thank you Dan for sharing your experience with us and raising vital awareness. 

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