Story
Thanks for taking the time to visit my JustGiving page.
Amyloidosis is a rare terminal disease. Treatment typically involves chemotherapy and a large drug regime. The illness causes multiple organ failure and the attendant indignities of a failing body.
Chris became ill with amyloidosis in April 2014 and died in October 2017. For Chris the disease progressed very rapidly. It was heartbreaking to see such a vibrant and active woman completely felled by illness. As she herself said, "this isn't the life I wanted".
Much more research needs to be done to help the people who live with amyloidosis. There needs to be more joined up thinking around the issue of caring for patients who don't live anywhere near the only National Amyloidosis Centre in London or who are too sick to travel there. There must be more support to manage an illness that limits how much the patient can control all the multiple medical and care interventions; more multi-disciplinary working across all teams caring for the patient; and more education generally and in the medical professions about this horrible disease. See this video for more information: https://youtu.be/T-kXrEMoAa4
I started walking the Ceredigion Coast Path north from Cardigan in 2016 and after Chris died I completed it.
I walked the Mary Towneley Loop of the Pennine Bridleway in 2017. Both these walks are very connected to Chris and me.
In October 2017, I walked the first, southern part of the Offa's Dyke Path from Chepstow to Knighton. A lovely walk of 80 miles over 6 days.
I'm going to keep on walking long distance paths to raise money, which will help to raise awareness of amyloidosis and hopefully help those who have amyloidosis. Walking also helps me to live a bit better with depression.
Any money raised via this page will go straight to the UCL Amyloidosis Research Fund. JustGiving is straightforward to use. Your details are safe – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. It’s the most efficient way to donate – saving time and cutting costs for the charity.