Wilson's Disease Association Fundraiser
Donation protected
Tomorrow is the 19th of April or World Liver Day for those who do not know. This is the global day for spreading awareness about liver disease, its misconceptions and the importance of promoting liver health.
Wilson’s disease is a rare genetic disorder that causes abnormal copper accumulation in the body particularly involving the liver, brain, and central nervous system. This is because Wilson’s Patients lack the gene responsible for copper metabolism leading to copper build up and heavy metal poisoning. Wilson’s disease is a multi-symptom disorder presenting in hepatic symptoms such as liver failure, nervous system symptoms such as tremors and difficulty with motion and speech as well as psychiatric symptoms such as personality changes, depression and psychosis. This disease affects roughly 1 in 30,000 people and is always fatal without early diagnosis and treatment. Because of the multifaceted nature of Wilson’s Disease, unlike other liver diseases, misdiagnosis is very common and currently it takes around 2 years to be accurately diagnosed with the disease. There is also currently no cure for Wilson’s disease and that current treatment is experimental, invasive and life-long.
I was diagnosed with Wilson’s Disease in July 2023 after experiencing my first symptoms in January 2022. Wilson’s Disease in many ways robbed me of my adolescence and will alter my daily life forever. However, my story is one of the lucky ones as my Wilson’s was diagnosed before I experienced permanent liver damage or permanent neurocognitive deterioration. However, most of us are not so lucky and many Wilson’s Patients do not get the opportunity to tell their story.
At the point of diagnosis I had never heard of Wilson’s Disease and lacked sufficient understanding of liver disease in general to properly understand my own condition. There is mass stigma around liver disease and in particular youth liver disease. The wonderful work of the Wilson’s Disease Association aims to raise awareness and understanding of the disease as well as support Wilson’s Patients worldwide and work towards eventually finding a cure!
My goal with this fundraiser is to raise £500 for the Wilson’s Disease Association and to do this I need the help from those of you with functioning livers. For the next month I ask those of you who opt in to tally up every alcoholic beverage that you buy out. For each drink I urge you to donate 50p to my go fund me which will in turn be donated to the Wilson’s Disease Association. Please send the final total of the tallied drinks on the 19th of May.
If as a result of this you drink less because you don’t want to be giving out your hard earned money, then this project will be promoting liver health. If however, you end up drinking a lot that month, you are drinking for good!
Thank you so very much and any support and further donation throughout the month is also greatly greatly appreciated.
Some useful links to further understand Wilson’s Disease
A link to the goals and visions of Wilson Disease Association
Some stories from some of the wonderful Wilson’s survivors and the families of those who unfortunately are no longer with us
Organizer
Maddy Joseph
Organizer
England