A Dundee mum who is forced to pull coin-sized pieces of cartilage from her nose every day says she fears she will not be around to see her kids grow up.
Katie Stewart, also known as Hogan, 34, has the rare condition granulomatosis with polyangiitis (GPA) – which causes blood vessels to become inflamed.
The condition has spread to Katie’s lungs and she is waiting to see if it is also going to affect her kidneys and liver.
The disease is incurable – and Katie, from Charleston, says it is “getting worse and worse every day”.
Dundee mum with GPA ‘terrified I am not going to be here for my children’
She told The Courier: “I am terrified I am not going to be here for my children – that I won’t live long enough to see them grow up.”
Katie has started memory boxes for her children – Ollie, 14, Ayla, 11 Teddy, three, and two-year-old Grace.
She said: “At times I think I can’t take any more, but I have to keep going for the sake of my children
“Doctors say they can’t give me a prognosis but I worry so much about the future and that I will die.
“There are days when I think I can’t do this any more but then I look at my kids and know they are my priority and that’s what matters most.”
Explaining how GPA affects her, Katie said: “Bits of cartilage just fall out of my nose and I have to pull away other pieces.
“You’re talking the size of 10 pence pieces. Every couple of hours, I’m at the sink trying to get it out my nose. It’s awful.
“I find breathing so difficult and there are times when I am on the floor trying to get a breath.
“I also suffer from severe insomnia but can then end up sleeping for 30 hours at a time.
‘One morning there were 30 bruises on my legs for no reason’
“I am so sore all the time and can wake up in the morning covered in bruises – one morning this week there were 30 bruises on my legs for no reason.
“My mobility is very poor and I have been referred to a rheumatologist.
“I just get so upset all the time and spend all day crying.
“My two older children and my mum and dad are amazing and help to keep me going.
“They all do so much for me.”
Health problems started in 2020 after ‘really bad case of Covid’
The former social care worker was diagnosed with the condition in September 2022, nine months after symptoms first appeared.
The cause of the condition is not known and there is no evidence that it is inherited.
However, without treatment, it can be fatal.
Although there is no cure, certain chemotherapy medications are used to treat the symptoms.
Katie says her health problems began in 2020 after having a “really bad case of Covid”, which caused her to lose her sense of taste and smell.
“I just assumed at the time that’s what it was,” she said.
But her sinuses did not clear for months, and Katie became increasingly concerned.
After initially being treated for suspected sinusitis, she eventually saw a consultant at Ninewells when her condition worsened.
She said: “As soon as he looked inside my nose he was shocked.
“It was such a mess and at that point, I had a big hole in it with bits of cartilage just falling out of it several times a day, and my septum was pretty much gone.”
Katie was immediately put on a course of chemotherapy but that ended in March.
‘My life is so different to what it used to be’
She has now started a new course of treatment which costs £2,000 every two to three weeks.
Katie said: “I had to wait for this and had to go before a panel to prove I was worthy of getting it – it was awful and caused me such distress.”
She is also hoping to begin another course of medication and regularly takes steroids.
She said: “The steroids have caused my face to swell and I look awful.
“My life now is so different to what it used to be. I used to be so sociable but now I never go out.”
Thousands donated in aid of Dundee mum with rare autoimmune disease
While she waits to see if her latest treatment works, Katie is keen to explore alternative and private treatments.
Friends have set up a GoFundMe fundraising page to help – with more than £12,000 already raised.
A post on the page said: “We want to give Katie a chance at life again while living with an incurable autoimmune disease that is life-limiting and taking everything away from her.”
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