A WOMAN with an autoimmune condition so rare only about one in 100,000 people are affected has spoken about the "bizarre and random" condition which can leave her in agony.
Katherine Gower, 42, was diagnosed with Adult Onset Still Disease back in 2021.
At the time she had beaten cancer and had “no idea” what the condition was.
Still's disease, a rare autoimmune inflammatory condition like arthritis, has no defined known causes.
Katherine who lives on the Frinton, Walton border, was diagnosed with acute myeloid leukaemia in 2019, undergoing chemotherapy before having a stem cell transplant in 2020.
She has been told Still's "may be linked” to her stem cell transplant and to also the tonsilitis she had in 2019, as bacterial or viral infections are also potential causes.
Katherine revealed she has been in remission from cancer “for four years from the day” with five-years being a major target.
Katherine said stills is where “the body’s immune system attacks itself” and is more common in children.
She has recently been feeling the symptoms have got worse with “more constant and sharp shooting pains”.
On one day her right knee was very painful and the next day it was her left wrist which made no sense as she is right-handed.
Katherine said: “It is very bizarre and random which makes it more difficult to plan things.”
“Unless I am wincing in pain you wouldn’t know if I had Still’s disease, another reason why I wanted to speak out.”
As a medical secretary, Katherine said she was able to speak to lots of nurses and doctors casually “sharing information and talking”, which alongside family discussions, help her.
After a one-week stay at Colchester Hospital and then nine weeks at Cambridge’s Addenbrooke's Hospital, it took an ‘action plan’ including weeks of later hours and working from home to “finally get all my job back”.
This January, Katherine became aware of the ‘Reasonable Adjustment Passport” where employers follow the 2010 Equality Act in giving disability workplace provisions.
However, Katherine admitted she ignored it due to her symptoms at the time getting better, and said: “Like everyone, I didn't think it was going to happen now”.
Katherine said her employer had been very helpful, adding: “I’ve always been a strong person but it’s about letting go and asking for help.”
“I don’t want to show I am vulnerable, but I am.”
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