Following the example of my uncles I have decided to run the Cardiff Marathon again, despite saying never again after last year, in memory of my Dad who died at the beginning of this year due to multiple organ failure as a result of amyloidosis.

Dad was diagnosed with “light chain type AL amyloidosis”. It appeared that survival post diagnosis of patients could be up to 4 years with a median of 17½ months, sadly Dad managed less than 5 months going into kidney failure due to the disease early on in his treatment regime. Dialysis was unsuccessful as the amyloid protein had also infiltrated the heart.

Dad bravely decided to have treatment suspended and opt for palliative care and passed away with dignity and without suffering in January. Amyloidosis is a devastating, progressive disease which is caused by a build up of Amyloid protein fibres in tissues and organs throughout the body which eventually, if not diagnosed, causes vital organ failure.

The UCL National Amyloidosis Centre at The Royal Free Hospital in Hampstead, services the whole country and much of Europe. Since 1999 has built expertise which is unparalleled elsewhere in the world.  The resource provided by the Amyloidosis Research Fund through the generosity of donors undoubtedly makes major contributions to alleviating the suffering and saving the lives of many of the individuals afflicted this insidious condition. But there is much work to be done to improve early diagnosis and effective treatment.

Donations are essential as the incidence of amyloidosis is between 1 and 5 in every 100,000 people every year. This largely incurable disease can be very difficult to diagnose due to its rarity and non-specific symptoms. It is believed that because of this, Amyloidosis is largely under-diagnosed. The UCL team because of the low occurrence of amyloidosis it does not attract the funding of more high profile diseases.

Dad had visited The Royal Free to have his disease typed and the UCL team drew up his treatment plan.

For more about the National Centre and Amyloidosis Research see http://www.ucl.ac.uk/silva/medicine/amyloidosis/index/

Thanks for taking the time to visit my JustGiving page. Or Text WWSE66 £5 to 70070

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

So please dig deep and donate now.