A MUM has told how she’s been left screaming in agony as she pulls large clumps of cartilage from her nose with tweezers several times a day due to an extremely rare condition
Katie Hogan, 34, from Dundee, started having sinus problems after catching Covid-19 in 2020 before being diagnosed with a rare condition called granulomatosis with polyangiitis (GPA) in the summer of 2022, by which point her nose was already “a complete mess”.
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GPA is a rare condition affecting around 10 to 20 people in every million worldwide, where blood vessels, usually in the ears, nose, sinuses, kidneys and lungs, become inflamed.
On average, it proves fatal within the first five months if left untreated, according to the US National Library of Medicine (NIH).
Katie claims it took more than a year to diagnose after she said doctors repeatedly mistook it for an infection and prescribed nasal spray.
Despite repeated hospital visits, none of Katie’s proposed treatments have worked and her symptoms, which also include bruising
and rashes, have deteriorated to the point where she now struggles to breathe and has to remove clumps of cartilage from her nose every three to four hours.
The process is so painful, Katie is concerned her next-door neighbours can hear her screaming and is afraid of traumatising her four children, Grace, two, Teddy, three, Ayla, 11, and Ollie, 14.
And Katie said she now has “no quality of life” and does not have the confidence to leave the house after her septum gave way, causing the left side of her nose to collapse.
She also revealed her face swelled up “like a football” due to the high doses of steroids she is taking to combat the illness.
Katie told PA Real Life: “There are times when I just don’t want to be on this earth because I’ve got no quality of life.
“It’s not good because I’m giving up on myself and on my family and children.”
Describing her daily experience for the past six months, Katie said: “Bits of cartilage just started falling out of my nose.
“Like 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.”
Katie said 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.
But her sinuses did not clear for months, and Katie became increasingly concerned.
She eventually went to see a GP who suggested she was suffering from sinusitis, a common condition usually caused by a viral infection which causes swelling in the sinuses, and prescribed her with nasal spray.
Over the next year, Katie’s airways did not clear up and she returned to see a doctor several times, but she said she was repeatedly given the same answer.
Alarm bells started ringing when she began falling asleep at strange times during the day while looking after her children.
She said: “I would just fall asleep randomly while sitting on the couch.
“And that’s not me, like I’ve never been one to go for a nap or anything.”
Katie pushed to be referred to Ninewells Hospital and Medical School but received a letter saying due to the pandemic there was likely to be a “lengthy wait”.
She was finally able to see an ENT consultant, a specialist who treats conditions affecting the ear, nose, throat, head and neck.
She said: “He knew straight away after looking up my nose that there was a problem.
“His words exactly were: ‘It’s just a complete mess’.”
Katie was given a date to have a biopsy, where doctors take a small tissue sample so they can examine it under the microscope.
She was diagnosed months later.
Describing the “excruciatingly painful” experience of removing the lumps, Katie said: “The house next door hear all this screaming and my kids have got to listen – you can’t even imagine how these things fit in your nose, it’s just bizarre.”
The left side of her nose eventually collapsed after Katie’s septum, the thin piece of cartilage separating the right and left nostril, gave way.
She said: “Now I’ve got no septum at all, so if I put nasal drops up my nostril it just comes out the other nostril, like it just goes straight through.”
This has crushed Katie’s confidence and she is now afraid to show her face in public, instead relying on her parents, Neil Stewart, 53, and Annie, 56, to run errands.
While there is no known cure for GPA, doctors have tried to tame Katie’s symptoms with rituximab, a type of medication which was originally designed to treat blood cancer, but it has not worked.
She was then given a “really high dose” of steroids which again failed to cure her breathing problems and have made her self-confidence issues worse.
She said: “My face was just like a football – so round.
“I know it’s just the way you look, but I am just so paranoid.
“Not that I was overly confident before, but I had a good social life.”
Katie thought there was light at the end of the tunnel when doctors diagnosed her with a similar, but even rarer, autoimmune disease called Eosinophilic granulomatosis with polyangiitis (EGPA) earlier
this year and suggested a new treatment, taken by injection every two to three weeks.
But because each 30ml syringe costs just shy of £2,000, the treatment first needed to be approved, which took another seven
weeks and she received her first injection last month.
Katie says she feels let down by the NHS care system and is concerned further delays could end up costing her life.
She added: “I understand that I’m not the only person waiting for treatment but I just feel like I haven’t been given any support from the hospital at all… it’s been an absolute shambles.
“I’m just trying to save my life… I’m only 34 and I want to be here a lot longer for my children.
“Hardly anybody has heard of this disease so even the doctors said ‘We don’t know, you’re better off getting in touch with a consultant’.”
Covid-19 and GPA have been found to share many clinical and radiological features, “making it challenging for clinicians to distinguish between the two”, according to a case report published by the BMJ.
Katie’s friends have set up a GoFundMe to help pay for specialist treatment and have so far managed to raise more than £11,000 of their £20,000 target.
Anyone looking to donate to the fundraiser can do so here.
A spokesperson for NHS Tayside said: “Due to patient confidentiality we are unable to comment on matters relating to individual cases.
“We would invite Ms Hogan to contact her consultant with any concerns she has about her care and treatment.
“Vasculitis is rare, presents in a wide range of ways, and is often very difficult to diagnose.
“It can affect multiple different systems, in subtle or more obvious ways.
“As people can present to a wide range of specialties, we have a network of specialties who meet regularly to discuss possible and confirmed cases of vasculitis, comprising rheumatology, nephrology, immunology, respiratory and ear, nose and throat.
“Diagnosis relies on a careful history, consideration of tests that may be supportive and extensive investigation to rule out other potential causes of the symptoms and syndromes, and discussion with colleagues.
“Ruling out alternative causes can take a significant amount of time, but is crucial, as the treatments involve powerful immunosuppressive medications, often for long term.
“Vasculitis is generally a multisystem disorder, affecting multiple organ systems, but can sometimes present in single organs.
“Treatment plans for patients can be complex and a range of therapies can be used.
“Response to treatment can take many weeks to months to determine and it is not uncommon to have first, second- and third-line treatments for vasculitis or reach remission.
“Relapse is not uncommon, and requires a careful reassessment of the original diagnosis, a thorough search for an additional diagnosis and further multidisciplinary team discussion to determine the best
next course of action.”
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