A rare disease stole my life at 23 and left me housebound

She was like any other healthy 23-year-old girl, until she began suffering from debilitating chest pain and fainting spells that left her homebound.

Alicia Fairclough, from Liverpool, England, said doctors assured her the symptoms, which lasted eight months, were due to a previous kidney infection.

However, the ex-professional dancer and dance teacher insisted on having a CT when her symptoms persisted. The scans showed she had an inflamed aorta, and the blood supply to her right kidney had been completely cut off, leading to her diagnosis of Takayasu’s arteritis (also known as TAK) — a rare autoimmune disease.

According to the Cleveland Clinic, TAK causes inflammation of the arteries, making parts of them weak and stretched out. This can lead to narrowed or blocked arteries, weakened artery walls, as well as arm or chest pain, high blood pressure, and eventually heart failure, stroke or further serious complications.

Fairclough also developed several other conditions in the time it took her to receive a diagnosis in September 2021. She said the barrage of medical conditions she was diagnosed with left her feeling “lost.”

Last year “was supposed to be my year,” Fairclough, who now works as a fashion company e-commerce and trade assistant, told NeedToKnow.Online. “I had met the love of my life, Thomas Green, got a new job in the career I want to pursue and felt so positive.”

Fairclough went from being a normal 23-year-old to calling the hospital her “second home.”

“I spend just as much time as an inpatient in the hospital [as] I do at my own home,” she admitted. “I would often ask myself ‘What did I do to deserve this?’ I felt confused and shocked to be diagnosed with TAK.”

Fairclough said she became “very isolated and lonely” after her diagnosis.

“I also say that I come with a lot of ‘baggage,’ and not a lot of people can relate or understand me,” she confessed. “They end up distancing themselves from me, which pretty much leaves me with no friends to do things with.”

Since her diagnosis, Fairclough now has to take 23 tablets each morning, along with needing to take steroids, leaving her with “awful side effects” including nausea and vomiting.

The treatment for TAK consists of high-dose, long-term prednisolone steroids, which has caused Fairclough to gain weight.

“I grieve the old, happy and healthy version of myself every day, and miss that bubbly, fun, confident woman that I was,” she admitted, adding her treatment has caused her to gain 98 pounds and left her with damaged joints, making it “incredibly difficult” to walk.

“I used to be an extremely active person, I went to the gym four to five days per week, and I was a professional dancer and dance teacher,” she recalled, adding her heart complications have left her prone to fainting, and she only leaves the house once a week.

Fairclough has also undergone brain surgery twice and suffers from insomnia and PTSD. After struggling to find people in the same position as her, she began posting updates about her condition to TikTok, in an effort to raise awareness about the condition.

“By using TikTok to raise awareness for TAK, I have managed to connect with so many other people around the world that have been diagnosed with this condition,” she explained.

“They have expressed to me that I am the first person they’ve seen online or spoken to who openly shares their battle, and that it makes them feel less alone,” she continued.

“Just because conditions are rare, it doesn’t mean that they don’t exist.”