Pat was diagnosed with AL Amyloidosis in 2004.  She endured a severely diminished quality of life caused by unrelenting symptoms, and passed away in June 2020 after battling with the disease for sixteen years.  She was a much loved wife, Mum, Nana and friend, and we miss her every day.  Pat's condition forced her to take early retirement from her job for the local education authority, give up an active social life and her dreams of a happy retirement that should have been filled with travel adventures and looking after her grandchildren.  Instead, in her own words, she lived her life as best she could, and spent many hours  researching the intracacies of this cruel disease.  What started as a means to better understand what was happening to her, quite quickly turned into a personal crusade to help others.  Pat went on to use her detailed knowledge of Amyloidosis to provide online support, advice and friendship to many other sufferers, both in the UK and all over the world.  As a family we knew she was involved in multiple online groups and forums across the global Amyloidosis community.  However it wasn't until she passed away and we received numerous condolence messages from people we barely knew of, and many others from complete strangers, that we understood just exactly how much of a positive difference she had made.  Because of her debilitating physical symptoms from Amyloidosis, Pat missed out on so much; she was unable to lead a 'normal' life.  Instead she bravely chose to channel her suffering, and she put any energy and focus she had left into helping those who were going through the similar shock and despair that she faced.  Her courage in doing so is nothing short of inspiring.  Pat is sadly no longer around to continue her personal crusade but we hope to honour her legacy by raising money in her memory to help future generations of Amyloidosis patients.  Please consider giving whatever you can.

Amyloidosis is a rare disease caused by damaging build up of abnormal protein fibres, called amyloid, within the tissues and organs. Amyloidosis can affect any part of the body and lead to life threatening organ failure. It causes the death of about one person in every thousand and there are about 6,000 cases in the UK at any time. The Amyloidosis Research Fund within the Royal Free Charity supports the research, development and patients of the UK NHS National Amyloidosis Centre (NAC) at the Royal Free Hospital. The Centre, established in 1999, is funded directly by NHS Specialised Services to provide diagnostic and management advisory services for all UK amyloidosis patients.

You can read more about Pat's personal journey here, in an article she wrote herself for the Myeloma UK publication AL Amyloidosis Matters, back in 2013:

https://www.myeloma.org.uk/wp-content/uploads/2018/06/Myeloma-UK-AL-amyloidosis-Matters-Autumn-2013.pdf?fbclid=IwAR1fJqNy91G1BRSKdXsFLX8fOU3edUWxZOUjrLLq0sO09ivczvFsxP7LtBQ