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The Inspiration-Lorna’s Story 

Hi my name is Lorna Milne and I have Amyloidosis.

I first noticed that something was wrong about two years ago when I fell over in the road and couldn't get up, having suddenly lost the feeling in my legs. I was taken to hospital and the doctors ran lots of tests and then told me I had a rare blood and bone marrow disease. I was then given a course of chemotherapy and this meant that I had to travel back and forth to Aberdeen.

Despite the treatment, I started to feel worse and in September 2014 after tests on my kidneys and a bone marrow biopsy the doctors confirmed that I had amyloidosis, which causes abnormal proteins, called amyloids, to build up on tissues and organs in the body. There is no cure.   I was put on and intense course of chemotherapy twice a week at Aberdeen to try and slow it down as my liver and spleen are covered with amyloidsand it is now heading towards my kidneys.

My treatment is organised by the National Amyloidosis Centre at the Royal Free Hospital in London, the only centre in Britain specializing in amyloidosis and sometimes I have to travel to London to have a scan.Doctors there are working hard to try and find a cure for this horrible disease and that is why Glenn, and his friends plan to cycle to London so they can raise awareness and raise desperately needed funds to continue the great work being done.

I live my life one day at a time just now hoping and praying they find a cure.  I have been left with side effects from both the disease and the treatment but I am determined to fight on and not let it beat me. 

The Enemy-What is Amyloidosis?

Amyloidosis is a rare disease caused by deposits of abnormal proteins, called amyloids in tissues and organs throughout the body. The amyloid deposits gradually build up in tissues and organs disrupting their structureand damaging the function of the affected tissues. In some cases extensive amyloid deposits can substantially replace healthy organs. When the build-up causes the tissues or organs to stop working properly, the conditionis called amyloidosis.

The amyloid deposits occasionally only affect one part of the body, but usually several different part of the body are affected such as the heart, kidneys, liver, or nerves.Without treatment, the amyloid deposits can eventually lead to organ failure and death – sometimes within only a year or two.

There are around 30 different proteins that can misfoldand form an amyloid, which is why there are many different types of amyloidosis.

The Charity-UCL Amyloidosis Fund 

The National Amyloidosis Centre was established by Professor Sir Mark Pepys and Professor Philip Hawkinsin 1999 with direct funding from the Department of Health and it now sees more than 3,500 patients each year. Vital research and development of new treatmentsat the Centre have helped to increase understanding of the disease and lead to improved outcomes for patients. The centre has received research grants and generous funding of patient care by the NHS but there is an urgent need for flexible research funds, which can be used for to development and support new ideas. The UCL Amyloidosis Research Fund, a charitable fund within University College London (UCL), was created to support the Centre and receives donations from patients, relatives and other supporters. It is an invaluable resource, enabling crucial developments for the benefit of patients that would otherwise not have been possible.

The resources provided by the UCL Amyloidosis Research Fund, through the generosity of donors help to alleviate the suffering and save the lives of many thousands of individuals afflicted by a terrible and up till now incurable disease. 

For more details visit: http://www.ucl.ac.uk/amyloidosis

The Team: Glenn Munro, Louise Gray. 

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