A “glamorous” mum-of-eight has died at the age of 47, having spent years indoors over fears about her appearance after a rare condition made her facial features “collapse”.
British woman Nicola Kilby didn’t want to look at herself in the mirror and refused to be photographed after a rare illness dramatically altered her appearance.
The mum had battled inflammatory blood vessel disease for five years, but the condition known as Wegener’s granulomatosis (GPA) had already started to change her appearance before she was diagnosed.
The condition attacked her ears, nose, sinuses, kidneys and lungs as well as leaving her deaf in both ears.
It also affected her soft palate, leaving her unable to talk and causing her nose to collapse.
But after spending years indoors hiding, the devoted mum and grandmother tragically died last month, The Sun reports.
Her son Kieran, 25, is now raising funds to help pay for his mum’s funeral costs, and hopes her story will raise awareness of GPA.
“My mum was an amazing person, she put everyone before herself. She was very outgoing, she was one of the most glamorous people I’ve ever met,” he told Birmingham Live.
“She adored her children and her grandchildren and gave anyone who came through the door the warmest welcome, like they were family.
“She was a very strong woman and even when she was in the worst pain imaginable, she’d never let on. Ella she did n’t want to subject anyone else to what she was going through.
Nicola had lived in Cirencester, 130km west of London, with her husband of 10 years, Kevin.
She leaves behind eight children aged between eight and 27.
Speaking about his mum’s battle with GPA, hotel worker Kieran said: “It’s one of the most horrendous things I can imagine anyone going through.
“One of the things my mum struggled with most was how dramatically her appearance changed. It ate away at her nose from her, she became deaf in both ears and she lost a lot of her soft palate so she could n’t talk properly anymore.
“Something minor like a cold would really affect her, to the point she could end up in hospital. It made the Covid pandemic very difficult for her.
“The doctors originally said she could live for 10 years with it, but it affected her very rapidly. It got to the point where she couldn’t even use the stairs, she was so weak.
“It was hard for my mum because she didn’t leave the house for years. She was so self-conscious about people staring at her.
“Even looking in a mirror was too difficult for her because of the damage it did to her nose. None of us have any pictures of my mum from the past five years because she would n’t allow it – not even with the grandkids on her birthday de ella. ”
Before her death, Kieran said his mum had been dreaming of getting a prosthetic nose after seeing the dramatic it change it made for a woman with vasculitis on a TV show.
“All my mum ever wanted was a normal nose,” he said.
“It was weird when she saw that episode on TV because most people have never heard of GPA, it’s not a word you hear often like cancer.
“My mum started asking questions about prosthetics. We all started looking into getting her a nose for Christmas, but all the clinics we could find were in America or they were extortionated.”
He added: “Not only did it affect her physically but it had a huge impact on her mental health as well. Because she wouldn’t leave the house, she became very isolated.
“Me and my siblings bought her a French bulldog to keep her company. It got to the point that she was so lonely that she started accepting random friend requests from strangers on Facebook so she had some friends to speak to. That’s something that really stuck with me.
“She went from being a normal outgoing mother to feeling disfigured. She just wanted to be able to take her children to the park and do normal mum things, but it changed every part of her life completely.
Any money raised by Kieran through his GoFundMe page will be used to pay the funeral costs, a memorial bench in Nicola’s name and the charity Vasculitis UK.
This article originally appeared on The Sun and was reproduced with permission
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