Avril Whitty, 29, was diagnosed with primary sclerosing cholangitis (PSC) shortly after marrying her husband, Justin.
It is a rare and poorly understood autoimmune disorder of the bile duct that has only recently been identified and is associated with severe and unpredictable symptoms that can sometimes rapidly progress to end-stage liver disease and the need for a liver transplant.
People with PSC are at increased risk of developing several cancers, including bile duct and colorectal cancer. More than three-quarters of patients also suffer from inflammatory bowel disease. Even after a liver transplant, PSC recurs in about 25 percent of patients. Like other people with PSC, there is currently no way to slow or stop the progression of this terrible disease, which is incurable.
Avril, who works at BNY Mellon, said she wanted to organize the fundraiser to raise awareness of PSC and to raise money for the PSC Support Charity, which is so important to her and her family.
“I have Primary Sclerosing Cholangitis (PSC), a rare and poorly understood liver disease, so I decided to create Pamper Me Pretty to support PSC.
“I had only been married six months when I was diagnosed and my husband and I were given a very dire prognosis, very little information about the disease or its treatment, and very little idea of where to go for help and support.
“I was scared and unsure. Everything I read online said I could live 10 years after diagnosis.
“It's devastating to think that I only have 10 years left when my life has only just begun. I've had multiple surgeries and visits to the hospital. This autoimmune disease has affected every aspect of my life and complicated other health concerns that other people might have resolved much quicker.”
“I am constantly fighting for my future and I want to make the most of it with this disease, alongside my husband and two amazing children. I have received fantastic support and information from the PSC Support Charity, which has allowed me to continue living as normal a life as possible. At this time I just want to make a difference for all those affected by this disease and help find a treatment that will extend and improve the lives of those affected.”
“Most people have never heard of PSC. I now want to raise awareness about this rare liver disease and help find further treatments and a cure.”
Avril and Justin are hoping to raise 12,000 euros from the event.
The couple, who have been together for 11 years, were childhood sweethearts and, despite her illness making it unlikely they could have children, the couple have two daughters, Alicia, 10, and Cora, 2.
When Avril began complaining of symptoms she was initially diagnosed with autoimmune hepatitis, but this delayed a proper diagnosis, and after further testing when medications did not work, she was finally correctly diagnosed with PSC.
Justin said that despite the uncertainty of Avril's condition, they are just living their lives and not living in fear of the unknown: “We don't know how quickly Avril's condition will deteriorate. If it does deteriorate quickly, there's a good chance she will need a liver transplant in the future, but we can't live in fear.”
“We're of the opinion that if you pretend to be sick, you'll actually get sick. You just have to live your life. Right now, she's not showing any major symptoms, so we're just going to get on with things.”
“Pamper me Pretty” will be held at the Talbot Hotel on August 28th at 2pm.
The day promises to be a fantastic day and will feature make-up demonstrations by Susan Ryan, skincare tutorials by Suzanne Murphy, hair demonstrations by Zamora, fashion shows by Runaway Bride, Benetton, Pamela Scott and The Loft, and of course afternoon tea and gift bags.
Doors will open at 1pm and there will be a discounted nail bar by Nail Boutique (50 per cent of proceeds will be donated to charity), make-up and tanning salon by The Beauty Bank, skincare salon by Forever Living, make-up salon by Sam McCauley and mini make-overs by qualified make-up artists including Laura Larkin MUA and Ciara Farrell Margolin MUA.
Avril said she also received sponsorship from BNY Mellon, Talbot Wexford, Sam McCauley's, O'Brien's Sandwich Bar and Air Mobile.
To purchase tickets, visit their Facebook page: www.facebook.com/pampermeprettyforpsc/ If you can't make it to the event but would like to support Avril and her charity, you can donate to Avril's Go Fund Me page: www.gofundme.com/2dt3x2k All proceeds from the day will be donated to the PSC Support charity.
