A “GLAMOROUS” mother of eight has died aged 47 after spending years indoors over fears about her appearance.
Nicola Kilby could barely look at herself in the mirror and refused to be photographed because she was self-aware of how she looked around after a rare disease changed her appearance.
The mother had battled inflammatory blood vessel disease for five years, but the condition known as Wegener’s granulomatosis (GPA) had already begun to change her appearance before she was diagnosed.
The condition affected her ears, nose, sinuses, kidneys and lungs, leaving her deaf in both ears.
It also affected her soft blanket, making her unable to speak and causing her nose to collapse.
The devoted mother and grandmother passed away last month.
Her son Kieran, 25, from Sutton Coldfield, is hoping to raise awareness of GPA and funds to pay for his mother’s funeral expenses as well as Vasculitis UK research.
He told Birmingham Live: “My mum was an amazing person, she put everyone in front of herself. She was very outgoing, she was one of the most glamorous people I’ve ever met.
“She adored her children and her grandchildren and welcomed everyone who walked through the door like they were family.
“She was a very strong woman and even when she was in the worst pain imaginable, she never showed it. She didn’t want to expose what she was going through to anyone.”
Nicola had lived in Cirencester, in the Cotswolds, with Kevin, her husband of 10 years.
She leaves eight children between the ages of eight and 27.
Hotel worker Kieran said of his mother’s struggle with GPA: “It’s one of the most horrific things I can imagine for anyone to go through.
“One of the things my mom struggled with the most was how dramatically her appearance changed. It gnawed at her nose, she became deaf in both ears, and she lost much of her soft skin, so she could not speak properly.
“Something as small as a cold would really hit her, to the point where she could end up in the hospital. That made the Covid pandemic very difficult for them.
“Doctors initially said she could live with it for 10 years, but it hit her very quickly. It got to the point where she couldn’t even use the stairs, she was so weak.
“It was hard for my mother because she didn’t leave the house for years. She was so confident because people were staring at her.
“Even looking in the mirror was too difficult for her because of the damage to her nose. Neither of us have pictures of my mom from the last five years because she wouldn’t let us – even with the grandkids on her birthday.”
Kieran recalled his mother’s reaction to an episode of This Time Next Year with Davina McCall, which featured a Redditch woman with vasculitis who was given a prosthetic nose.
He said: “All my mum ever wanted was a normal nose.
“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 a lot like cancer.
“My mother started asking questions about prosthetics. We all started by getting her a nose for Christmas, but all the clinics we could find were in America or they were blackmailing.”
He added: “Not only has it impacted her physically, but her mental health as well. Because she didn’t want to leave the house, she became very isolated.
“My siblings and I bought her a French bulldog to keep her company. It got to the point where she was so lonely that she started accepting random friend requests from strangers on Facebook so she could have some friends to talk to. That’s something that really stuck with me.
“She’s gone from being a normal, outgoing mother to feeling disfigured. She just wanted to be able to take her kids to the park and do normal mom stuff, but it completely changed every part of her life.”
Any money Kieran raises through his GoFundMe page will be used to pay for funeral expenses, a memorial bench in Nicola’s name and the Vaculitis UK charity.
https://www.the-sun.com/health/5971818/mum-dead-last-years-indoors-disease-appearance/ The ‘glamorous’ mother-of-eight dies aged 47 after spending years indoors after a rare disease made her look scared