She Was Misdiagnosed Before Finding Out That She Has One Of The Rarest Diseases In The World
Alicia, who goes by @aliciafairclough_ on TikTok, was misdiagnosed before finding out at 21 that she has one of the rarest diseases in the world.
Alicia’s story starts two years ago when she was getting over a kidney infection and needed to test her blood as she has hyperthyroidism, so she needs to routinely get her blood tested for that.
Alicia’s doctor called her with the results and said the inflammation markers in her blood were extremely high, but they chalked it up to her just having gotten over that infection.
Five months later, Alicia developed anemia, she was experiencing dizziness and fainting, and she was rapidly losing weight like crazy.
These were the symptoms that led to her being misdiagnosed before someone finally got to the bottom of what was going on with her.
Alicia’s doctor put her on iron, but as they kept retesting her blood, her iron levels were dropping, yet her inflammation markers were spiking up.
Knowing something had to be seriously wrong, Alicia argued with her doctor to please investigate her kidneys, so they agreed to get her a CT scan.
Two months after the scan, a doctor phoned Alicia and said she needed to urgently rush to a hospital, as she might need to undergo heart surgery.
Alicia was shocked, and she burst into tears, scared for her life. Alicia got down to the hospital, where she stayed for literally two months. This was during the pandemic, so she was not allowed to have any visitors.
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Doctors ran tons of tests on Alicia and determined she had some kind of vasculitis. She was getting sicker and sicker, and doctors doubted that she was going to survive.
Alicia was finally diagnosed with Takayasu arteritis, one of the rarest diseases in the world that essentially is the inflammation of your aorta and its branches.
Alicia was also told she has right renal artery stenosis, a complication of her disease, that caused her to lose the function of her right kidney while developing stage four chronic kidney disease.
She suffered from a myriad of additional health conditions in the process of all of this. Now, there is no cure for Takayasu arteritis, but Alicia is in remission.
“But that doesn’t mean I can live normally,” Alicia pointed out. She was put on steroids, which saved her life but caused her to gain weight.
Since Takayasu arteritis is an autoimmune disease, Alicia will have to remain on immunosuppressants for the rest of her life.
Alicia has to take various medications for her heart and kidneys, and she’s on around 10 different medications daily.
Alicia says she’s grateful for ending up with that infection, as it helped her to eventually receive her diagnosis and save her life.
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