Devoted mother died from a rare condition that forced her to feel ashamed about her look and spent the last years of her life locked in her house
Our perception of how we look can have a big impact on the value we place on ourselves and how much self-confidence we have in our day-to-day lives. Therefore, it is of great importance to feel good about our appearance and not to let our appearance, especially if it is disrupted by any disease or condition, be an obstacle in our everyday life.
A devoted mother of eight children who felt ashamed of her looks caused by a rare condition and spent the last years of her life locked in her house to avoid contact with people, died at the age of 47.
Because the woman had become so self-conscious about her appearance as a result of a rare ailment, she avoided looking at herself in the mirror and also refused to have her picture taken.
The mother had been suffering from inflammatory blood vessel disease for five years before she was diagnosed with the disorder known as Wegener’s Granulomatosis (GPA). However, the mother’s appearance had already begun to change before she was given this diagnosis.
Her ears, nose, sinuses, kidneys, and lungs were all affected by the condition, and she ended up becoming deaf in both of her ears as a result. The condition also damaged her soft palate, which made it impossible for her to speak and caused her nose to collapse.
The loving mother and grandmother passed away a month ago.
Her son is attempting to raise awareness of GPA and money so that he may contribute to a research fund and help pay for his mother’s funeral expenses.
“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. 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. She didn’t want to subject anyone else to what she was going through,” he said.
The woman, Nicola K., left behind eight children, ranging in age from eight to 27.
“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, she became deaf in both ears and she lost a lot of her soft pallet so she couldn’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 wouldn’t allow it – not even with the grandkids on her birthday,” Nicola’s son said.
He recalled his mother’s response to an episode of This Time Next Year with Davina McCall, which featured a woman who suffered from vasculitis and was fitted with a prosthetic nose.
“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 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 extortionate. 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,” he added.