A young woman has opened up about her life with one of the world’s rarest heart diseases after being diagnosed at just 21.
Alicia Fairclough, now 23, from Liverpool, is battling with a condition known as Taakayasu’s arteritis. This chronic inflammatory disease impacts the body’s largest blood vessel – the aorta – and its branches. While it can’t be cured, it can be managed with treatment.
Takayasu arteritis is incredibly rare, with a reported global incidence rate of only one to two per million. Studies show that the majority of those affected are women.
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Alicia’s journey to diagnosis began two years ago when she developed a urinary tract infection, which then escalated into a kidney infection. Sharing her story on TikTok, she said: “Long story short, I had to go to A&E for antibiotics – but that’s where the story starts.”
She also provided some insight into her previous health struggles, reports Wales Online. She said: “Just for a bit of context, I have a condition called hypothyroidism and I’ve had that since I was 17. So, I get regular blood tests.”
The NHS describes an underactive thyroid gland (hypothyroidism) as a condition where your thyroid gland does not produce enough hormones. Symptoms can include fatigue, weight gain, a puffy-looking face, thinned or partly missing eyebrows, slow movements and thoughts, constipation and depression.
Alicia’s regular blood tests allowed her doctor to notice that her inflammation markers were “super high”. Initially, this was attributed to the kidney infection she was battling.
Five months on, Alicia began to experience symptoms of anaemia. She said: “I was really dizzy, I was losing weight dramatically.
“My GP prescribed iron supplements, but every time my blood was re-tested, my iron levels were dropping and my inflammation markers were rising. Something wasn’t right.”
After a month of “back-and-forth” with her GP, Alicia was referred for a CT scan – a procedure that captures detailed images of the body’s interior. She claims at first she didn’t receive any feedback from her GP following the scan.
She said: “In my 21-year-old mind, I assumed everything was fine.” However, when she did get a call “two months later”, Alicia says a doctor asked if anyone had gone over her CT scan results with her.
“I said, ‘no’. The doctor then told me over the phone, ‘you need to pack a bag for two to three days and head straight to the hospital. It is not looking good, you might require heart surgery’.”
Alicia was taken aback by this news, especially after being informed “this whole time it was my kidneys”. The 23-year-old TikToker was alone in her flat when she got the call and admits to breaking down in tears.
She added: “My boyfriend was in Ibiza with the lads. So I got to hospital and I’m literally there for two months, I’m not even kidding. It was during covid so I had no visitors at all.
“The doctors are telling me I’m ‘super lucky to be alive’. I had MRI scan, PET scan, echocardiogram, CT scan – every kind of scan, every kind of test.”
She said: “They work out it is a form of vasculitis and it was an auto-immune disease, they just didn’t know which one. After the longest time possible – I was declining rapidly, the doctors didn’t think I was going to make it – I was finally diagnosed with a form of large vessel vasculitis, which is called Taakayasu’s arteritis.”
“I do have another condition which is a complication of Taakayasu’s arteritis called Renal artery stenosis. No blood supply gets to my kidneys so currently I don’t have a right kidney anymore, I only have my left kidney, which also means I have chronic kidney disease in stage four.”
While in hospital, Alicia says doctors found more health complications, including a leaky valve in the heart, high blood pressure and fluid on the heart. The 23-year-old said she was prescribed steroids that attack the inflammation, but being on them has caused her body to change its appearance.
Alicia admitted that she used to be on a cocktail of up to 28 different medications, although this has now been reduced to 10. Due to being on a high dose of steroids for an extended period of time, Alicia developed another health condition known as intracranial hypotension.
She said: “It led me to having two brain surgeries.” Intracranial hypotension is a medical condition where the fluid pressure inside the skull is abnormally low.
The TikToker disclosed that living with Taakayasu’s arteritis can be “frustrating” as it prevents her from doing ‘ordinary things in life’. Alicia reports experiencing a raft of symptoms before knowing she had the condition, which also resulted in her being “misdiagnosed for the longest time”, such as: feeling constantly fatigued, unintentional weight loss, high inflammation markers and frequent bouts of light-headedness and dizziness.
According to her, other symptoms that can manifest are headaches, visual disturbances, shortness of breath, chest pains, diarrhoea, night sweats, high blood pressure or varying blood pressure across your limbs.
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Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
