Mum battling rare liver disease
UNIQUE LOCAL FUNDRAISER TO RAISE AWARENESS
A DRINAGH woman is organising a unique fundraiser to raise awareness of a rare liver disease having being diagnosed with the debilitating disease herself.
29-year-old Avril Whitty was diagnosed with Primary Sclerosing Cholangitis (PSC) shortly after marrying husband Justin.
The disease which has only been identified in recent years rare and poorly understood autoimmune disease of the bile ducts. Symptoms can be severe and unpredictable, sometimes progressing rapidly to end stage liver disease, requiring a liver transplant.
PSC-ers have increased chances of developing some cancers, including bile duct cancer and colon cancer. More than three quarters also live with Inflammatory Bowel Disease. Even after a liver transplant, PSC returns in around 25 per cent of patients. Like all PSC patients Avril has no way of slowing or stopping the progress of this devastating disease which is currently incurable.
Avril who works in BNY Mellon said she wanted to organise the fundraiser to both raise awareness of PSC and to fundraise for the PSC Support charity which has been invaluable to her and her family.
‘I decided to organise Pamper Me Pretty for PSC Support as I suffer from Primary Sclerosing Cholangitis (PSC), a rare and poorly understood liver disease.
‘When I was diagnosed I was only six months married and my husband and I were given a very grim prognosis and very little information about the disease or its care let alone where you could get help and support.
‘I was worried and completely in the dark. All the stories I read online told me about a life expectancy of ten years post diagnosis.
‘ Thinking you may only have ten years left when you think your life is only beginning is devastating. I have had many operations and visits to hospitals. This auto-immune disease has impacted on all aspects of my life and complicates other health concerns that others may get over more quickly.
‘I am always fighting for my future and looking to make the most of it with my husband and two amazing children even with this condition. I have been given amazing support and information from the PSC Support charity that has helped me continue to live a normal life in as much as possible and at this point I would like to do something that will make a difference for all those impacted by this disease to help find a treatment that will prolong and improve the life of patients.
‘Most people have never heard of PSC and now I want to raise awareness of this rare liver disease in attempt to help find additional treatment and a cure.’
Avril and Justin hope to raise €12,000 from the event.
The couple who have been together for eleven years were childhood sweethearts. Despite being given little hope of having children because of her condition the couple have two daughters, Alicia (10) and Cora (2).
Avril was initially told she had Auto Immune Hepatitis when she started to complain about her symptoms which lead to a delay in being properly diagnosed. It was only when further investigations were carried out because she wasn’t responding to medication that PSC was correctly diagnosed.
Justin said that despite the uncertainty of her condition they simply live their lives and don’t live in fear of the unknown. ‘We don’t know how rapidly Avril’s condition will deteriorate. More than likely she’ll need a liver transplant in the future if she gets worse very quickly but you can’t live in fear.
‘ The way we look at it is if you are going to act sick you’ll feel sick. You just have to live your life. She’s not showing much symptoms at the moment so we just get on with things.
Pamper me Pretty takes place on August 28 at 2pm in the Talbot Hotel.
The day promises to be a great day out and includes makeup demonstrations by Susan Ryan, skin care tutorials by Suzanne Murphy, hair demonstrations by Zamora, a fashion show with Runaway Bride, Benetton, Pamela Scott and The Loft, not to mention the afternoon tea and a goody bag.
Doors will open at 1pm with a discounted nail bar from the Nail Boutique where 50 per cent of proceeds will go to the charity, make-up and tanning stall from The Beauty Bank, a skincare stall from Forever Living, makeup stall from Sam McCauley’s and mini make-overs from qualified makeup artists including Laura Larkin MUA and Ciara Farrell-Margolin MUA.
Avril said that she also received sponsorship from BNY Mellon, The Talbot Wexford, Sam McCauley’s, O’Brien’s Sandwich Bar and Eir mobile.
To buy tickets check out the Facebook page www.facebook.com/pampermeprettyforpsc/. If you can’t make the event but want to support Avril and her charity you can donate to Avril’s Go Fund Me page www.gofundme.com/2dt3x2k. All proceeds raised on the day will go to the PSC Support charity.