A brave and inspirational Scunthorpe mum who is battling a rare and life-limiting condition which attacks her organs said she “wouldn’t be here today” if it wasn’t for the love and support of her husband and son.
Amanda Kenvyn, 34, started experiencing unusual symptoms whilst pregnant with her son Toby, including headaches, joint pain and a large abscess on her breast. She was reassured by doctors that her symptoms were “normal” and that they would disappear after she gave birth.
But after she delivered Toby via C-section in January 2022, she spent five days in hospital due to a suspected infection. Two weeks later, she began suffering with more headaches and sinus pain, which doctors initially thought was sinusitis.
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When Amanda’s symptoms became so severe that she was unable to lift her son out of his cot due to a loss of sensation in her hands, and couldn’t get to him as he cried because she lost the sensation in her legs, her husband rushed her to hospital.
Recalling the harrowing experience to Scunthorpe Live, Amanda said: “It was really scary. [Doctors] said the loss of sensation in my hands was down to carpel tunnel syndrome and said the loss of feeling in my legs was because of an infection, but they couldn’t pinpoint exactly what it was.
(Image: Amanda Kenvyn)
“I kept going back to the doctors and they did lots of tests. One doctor was honest with me and said she was perplexed and had no idea what was wrong with me, and asked if she could reach out to other doctors for their opinion.”
In the meantime, Amanda’s nose gradually collapsed, which led doctors to refer her to an emergency hospital appointment. In June 2022, she was diagnosed with the rare condition Granulomatosis with Polyangiitis (GPA), a type of vasculitis that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys.
“I know of only two other people who have got it. I can understand why doctors didn’t know what I had because they’d never heard of it,” Amanda said.
Whilst waiting for another appointment, Amanda started vomiting blood and became breathless. A chest X-ray detected three masses on her left lung, a side effect of the disease.
She continued: “The condition affects your blood vessels, which causes inflammation in the body, then attacks organs, so it’s chosen my lungs and my sinuses. It can also attack your brain and kidneys but so far it hasn’t.”
As a result of her condition, Amanda has also been diagnosed with asthma and Subglottic Stenosis, a narrowing of the airway in the part of the voice box below the vocal cords. She has undergone surgery three times due to her windpipe closing up, and another operation to have glass tubes inserted into each eye due to blocked tear ducts.
(Image: Amanda Kenvyn)
Amanda’s treatment includes a low dose of an immunotherapy drug called rituximab, but said her life is nothing like it once was due to the complications of the condition.
She said: “It affects my life every day. It’s physically draining and mentally draining, but I’m just glad I’ve got people around me keeping me going. If I didn’t have my son and husband I wouldn’t be here. Next week I’m 34 and I used to have this life where I could do whatever I wanted and now I’m having to work part-time because I can’t manage a full week’s worth of work because it causes me extreme fatigue. Most nights I’m in bed at around 8pm.
“The costs have added up because I used to work 40 hours a week and now I only work 22, and because of all the hospital trips to Grimsby and Hull. I’ve had to move into a bungalow because I can’t do stairs any more.
“I also booked a holiday with a travel agent and had to cancel because I had to go in for emergency surgery, I lost £1,700 and they wouldn’t give me a penny back. So now I’ve got nothing to look forward to and no money.
“We’ve booked a day out at CBeebies Land next week and are trying to do days out where we can. There’s some days where I can’t get out of bed or do anything, so I’m trying to enjoy life where I can.”
(Image: Amanda Kenvyn)
Amanda’s husband Gareth has set up a Gofundme fundraiser in a bid to raise some of the money lost during her health struggles.
The description reads: “This has taken a real toll on Amanda with her mental health and well-being and financial loss. Even though Amanda is going through such a terrible time she still tries to smile every day and work and live her life. She is an inspiration and I don’t know if I could be that strong holding down a job, looking after a toddler and having intense treatments and surgeries.
“Unfortunately Amanda is not in remission as yet but doctors are trying everything they can to get Amanda better. This is such a rare disease it’s taken doctors longer than usual. Amanda is 33 and is wanting to fight this for her son and family.
“This woman is my world and I would do anything for her but unfortunately I need your help.”
To donate to Amanda’s fundraiser, you can do so by clicking here.
Original artice: https://www.grimsbytelegraph.co.uk/all-about/scunthorpe
