Meet Sophie, an 11-year-old who loves music, adventures and her family. After two life-threatening adrenal crises, including one during a family holiday to Disneyland Paris, Sophie was finally diagnosed with Addison’s disease. She’s sharing her story to highlight the warning signs she experienced before diagnosis, and to help other young people and families feel a little less alone.
Here, in her own words, Sophie talks about her diagnosis, life with Addison's, and being interviewed for the BBC to spread awareness!
Meet Sophie
Hi! I'm Sophie, I'm 11 and I live on South Uist. I love music, adventures, my family, giving hugs and raising awareness of Addison's disease.
Most people hear about the day I was finally diagnosed with Addison’s disease, but my journey actually started long before that. Looking back now, my body had already been trying to tell everyone that something was wrong.
The First Warning
On Christmas Eve 2023, I became very poorly with what everyone thought was a gastro bug. I had been vomiting, and my sodium level dropped dangerously low to 115. I started having absence seizures, and I was so unwell that I had to be flown by air ambulance from the Western Isles to the Royal Hospital for Children in Glasgow.
I was treated in hospital and eventually became well enough to go home. At the time, everyone thought I had just been extremely unlucky and had reacted badly to a sickness bug.
Nobody knew that it may have been the first major warning that my adrenal glands weren’t working properly.
I stayed unwell in the months that followed. Then, in September 2024, I became ill again. This time, I was admitted to hospital with what everyone thought was croup because I was struggling to breathe. I recovered and went home, but once again, nobody knew that my body might have been giving us another warning.
A Dream Holiday Turns Critical
A few weeks later, in October 2024, my family and I went on our dream holiday to Disneyland Paris.
I was so excited. We had looked forward to the holiday for such a long time, and I couldn’t wait to see the castle, meet the characters and go on the rides. But during the holiday, I started feeling unwell.
At first, everyone thought it was another sickness bug. I was vomiting and couldn’t eat. Mum and Dad stayed with me in our hotel room, hoping that I would start to feel better after some rest. Instead, I became worse.
I became very sleepy and wasn’t acting like myself. Dad knew that something wasn’t right and called for help. When the emergency services arrived, they checked my blood sugar. It was only 0.3 g/L, which is around 1.7 mmol/L. They gave me glucose straight away and rushed me to hospital. Everyone hoped that treating my low blood sugar would make me better, but it didn’t.
I continued vomiting, and my blood tests showed that my sodium was dangerously low. It was 111 when I first arrived at the hospital, but it later dropped even further to 105.
Then everything became a blur. I had a seizure. My oxygen level dropped to 78%, and I had to be transferred to the Paediatric Intensive Care Unit in Robert Debre hospital in Central Paris. I was critically ill.
Finding the Answer
The doctors in France worked hard to find out what was happening to me. They noticed that my skin looked much darker than it should have. It wasn’t just a tan from being on holiday. It was something called hyperpigmentation, which can be a sign of Addison’s disease.
After lots of blood tests and treatment, the doctors finally found the answer. I had Primary Adrenal Insufficiency, also known as Addison’s disease.
My adrenal glands weren’t producing enough of the hormones my body needed to keep me alive, especially when I was ill or under stress. I was treated with intravenous hydrocortisone, and slowly I began to improve. But even when I was well enough to leave intensive care, I still wasn’t well enough to simply get on a plane and travel home. A medic had to travel from Scotland to France to bring us back safely, in case anything happened to me during the journey.
When we finally arrived back in Scotland, I still couldn’t go straight home. I spent another week in the Royal Hospital for Children in Glasgow, where the doctors continued to look after me and made sure my new medication was working properly.
My family also had to learn about hydrocortisone, fludrocortisone, stress dosing, emergency injections and how to recognise an adrenal crisis. Only after that week in Glasgow was I finally well enough to travel home to South Uist.
Learning to Live with Addison's
What had started as a dream family holiday had ended with me in intensive care in another country, being diagnosed with a lifelong condition and my family having to learn how to keep me safe.
Getting home didn’t mean that everything went back to normal. We had to adjust to a completely new life.
I now take hydrocortisone several times every day and fludrocortisone once a day. When I am ill, injured, very stressed or doing something that puts extra strain on my body, I sometimes need extra hydrocortisone. My family also carries an emergency hydrocortisone injection in case I become too unwell to take my medicine.
Living with Addison’s disease isn’t always easy.
There have been more hospital stays, lots of appointments and times when we have all felt scared. Sometimes it can be hard knowing whether a symptom is something small or the beginning of an adrenal crisis. But Addison’s disease doesn’t stop me from being me.
I still love going on adventures, spending time with my family, making videos, dancing and dreaming about what I want to do in the future. I have also learned that I am much stronger than I ever realised. My family and I have travelled to attend ADSHG events, practised the emergency injection and met lots of people affected by Addison's and all types of adrenal insufficiency.
Speaking with the BBC
I got to be on BBC Gaelic News to talk about having Addison’s disease. I was a little bit nervous before we started, but I actually loved doing it and it was really fun!
They filmed me doing things I enjoy, like going on my skateboard and riding my bike, which was probably my favourite part. It didn’t really feel like I was being interviewed all the time because everyone made it fun. ADSHG were part of the interview as well, and an article was published on BBC Naidheachdan, the BBC’s Gaelic-language news service website, which you can read here.
Shona, the presenter, was so lovely and friendly. She helped me when I was talking about Addison’s and made it really easy for me to explain what it is like having it and how it affects me.
I’m really glad I did the interview because lots of people don’t know what Addison’s disease is. I hope that by talking about it, more people will understand it and it might help other children who have Addison’s too. I felt really proud when I saw myself on the news!
Sharing My Story To Help Others
I hope that sharing my story helps more people understand the signs of Addison’s disease, especially in children.
Looking back, there were warning signs before I was diagnosed. I had already become dangerously ill with low sodium, and my family had already been through an emergency air ambulance transfer. But Addison’s disease can be very difficult to recognise because its symptoms can look like lots of other common illnesses.
If my story helps even one child get diagnosed before becoming as critically ill as I did, then sharing it will have been worth it.
Because no child should have to become dangerously ill before getting the diagnosis and treatment that could save their life.
We ask Sophie our most asked "Addison's Admin" questions here at ADSHG!
How do you remember to take your tablets?
My parents have alarms set on their phones, and I have reminders too on my watch. We always carry my tablets with us so I never miss a dose.
How do you carry your injection kit?
I wear a MedicAlert bracelet every day and carry an emergency steroid card with me wherever I go. I also have the ADSHG keyring attached to my bag. In the car I have a seat belt cover that states I have Addison's disease and I am steroid dependent.
What type of medical alert identification do you have?
We always carry my emergency hydrocortisone injection kit with us. My family know when and how to use it if I have an adrenal crisis or can't take my tablets.
Follow Sophie's journey on Instagram @sophies.addisons.journey
Read BBC Gaelic News article, Addison's Disease: "She wasn't there...she was looking through me"
Watch Sophie's BBC interview on YouTube