Hi everyone, I’m Chloe! I am a 24-year-old University Graduate living with Addison’s disease. Before my diagnosis, in November 2020, I had never even heard of Addison’s. Since then, I have become more involved in the adrenal insufficiency community, begun working with the ADSHG and have met some amazing people along the way.

The beginning of it all

In September 2020, during the COVID-19 lockdown, I developed symptoms, which progressively worsened and included: weight loss; muscle weakness; no appetite and darkened skin pigmentation. These symptoms were frightening and I was really concerned about what was happening to me. I was so unwell and terrified that I was always going to feel as awful as I did. When I would go to work people would ask me if I had been on holiday because of how tanned my skin had become - I hadn’t. I looked well but had never felt worse.

Here is a picture of how tanned my hands had become pre-diagnosis (I promise I don't have fake tan on) compared to my hands just now.

My diagnosis struggle

After noticing my symptoms, I tried to get answers but I experienced many setbacks and dead ends. As this occurred during the pandemic my GP practice would only offer patients a telephone consultation. I spoke with two different GPs several times and eventually decided to go private. There were many suggestions given as to what was causing my symptoms, such as a viral infection, lactose intolerance and even the suggestion that my illness may be mental. I was so frustrated and felt like no one understood why I was so ill or what was happening to me.

The day that changed my life

One day I was sent home from work as I was extremely ill and had been sick several times. My mum, my biggest supporter and advocate, was desperate for answers and decided to contact her friend, who is a GP. She had mentioned to her all of my symptoms and she said that although she had never diagnosed Addison's Disease in all her years of practice, my symptoms sounded like Addison’s disease. She advised that I head straight to A&E and once I was there I received emergency care. I was kept in hospital for 4 days and was very well cared for. My consultant was very thorough at explaining exactly what my diagnosis meant, how this will impact my life and gave me lots of printed information, some of which was from the ADSHG website. I now also have a very helpful endocrine nurse who I can contact whenever I need support.

Becoming my own advocate

Once diagnosed I set on a mission to educate myself as best I can. Being diagnosed with a rare disease at a young age can be very daunting and lonely, especially if you have never heard of the disease or know anyone with the same illness. During my search for answers and community I discovered the ADSHG and became a member. Soon after I attended my first members meet up online. During this call I met others like me, and I felt much less alone. I realised the importance of sharing our stories and experiences as it helps us to better understand our condition. Since then, I have become increasingly involved in the rare disease and adrenal insufficiency community by attending events, participating in studies and volunteering for the ADSHG. I am also a NICE committee lay member developing a guideline on adrenal insufficiency. I briefly became a trustee for the ADSHG at the July 2022 AGM and more recently joined the Ops team as an Operations Support Assistant. I look forward to working with the charity, raising awareness and exploring the impact we can have for others.

"The last two years of my life have been challenging but I see my diagnosis as an opportunity rather than a hindrance. I hope to continue to advocate for myself and others and make a difference in the future."

Addison's Admin

How do you remember to take your tablets? I have a small dosette box, split into 3 sections – morning, afternoon and evening. I also have reminders set on my phone and apple watch to alert me when it is time to take my tablet.

How do you carry your injection kit? I keep my kit inside an ADSHG injection kit box which I carry with me in my bag. I also have a backup kit which I keep in my car.

What type of medical alert identification do you have? I wear a clip attached to my apple watch which details my name, Addison's Disease, my allergies and an emergency contact phone number. I also have my Medical ID set up on my phone and always carry my Steroid Emergency Card.

Author: Chloe 

Operations Support Assistant

Hear more from Chloe on her LinkedIN page.

Addison's disease can strike at any age - we're here to support you.

Visit our Young Persons page for more resources

Catch up on Chloe's Children and Young Adults column in our members' magazine, where she shares her insights into life with Addison's, powering up the voices of young people living with a rare disease.

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