Charlie Wilson’s life changed after she was diagnosed with extrapulmonary sarcoidosis, which causes small patches of swollen tissue to develop in organs throughout the body
A British woman thought she had woken up with aches similar to post-gym pain — but she actually had a rare illness.
Charlie Wilson, 38, now uses a wheelchair after she was diagnosed with extrapulmonary sarcoidosis, a rare condition which causes small patches of swollen tissue to develop in organs throughout the body.
Before becoming ill, Charlie had been living what she described as a “normal” life in Magaluf, Mallorca, where she worked as a social media manager.
But she suddenly woke with aches and pains, which got worse over time and went to see a doctor. Her vitamin B12, folic acid, potassium and iron levels were “dangerously low,” it was discovered.
Charlie, originally from Darlington, County Durham, spent three weeks in hospital in Magaluf where she had multiple tests and scans, which led to the diagnosis of extrapulmonary sarcoidosis. There are ways to manage this but, for some people, the condition slowly gets worse over time and they end up with organ damage.
The former social media boss, who has now had to return to the UK, said: “They brought out two neurologists to do a brain scan. I had 33 blood tests, a chest scan, a brain scan, a CT scan and a PET scan. They found something in the biopsy and they thought it was sarcoidosis, but that comes up in your lungs. There was nothing wrong in my torso.”
Charlie broke out in lumps all over her body during her time in hospital. Describing the agony, she said: “At that point if I had the option to amputate my legs I would have had it, that was the level of pain I was in.”
Sarcoidosis most commonly affects the lungs. However, Charlie’s condition is isolated and instead affects her limbs, joints and bones.
Following her diagnosis, Charlie was placed on methotrexate, a low form of chemotherapy, once a week for two months. When it “wasn’t working”, she was moved onto adalimumab, which she said blocks the part of the body that produces inflammation. She said the medication also suppresses her immune system, meaning she is “constantly sick”.
Unable to return to work, Charlie moved back to the UK in December 2025 and is still waiting for her medication to be prescribed after previously receiving it in Spain. Now, her life looks completely different. Once someone who loved travelling from country to country, Charlie said she now feels “lucky” if she makes it to different rooms in her home.
Charlie added: “Now I’m lucky if I go into four different rooms every day. I don’t really tend to go out so much – I’m in a wheelchair now when I’m in a flare up and I can’t get up and down kerbs by myself so it’s not very often I go out in my wheelchair.
“And the boredom is terrible, my sister and my friends have bought me colouring books, I can only watch so much TV. It’s a once in a lifetime illness I’m dealing with.”
