I have set myself a cycle challenge in memory of my brother David who died at the beginning of this year due to multiple organ failure as a result of amyloidosis. David 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 David 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.

David bravely decided to have treatment suspended and opt for palliative care and passed away with dignity and without suffering. 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.

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

I intend to cycle from Somerset where David spent his teenage years and visit all the other addresses where David has lived, worked or attended University. It will include a coast to coast section (Newcastle to Irvine) finishing in the Scottish Borders where David had spent his far too short retirement. I plan to leave Somerset on 8 June and with a little luck complete the challenge by the end of June having covered over 850 miles. On some sections I will be accompanied by friends or relatives, I will have no back up and camp whenever possible.

PLEASE GIVE AS GENROUSLY AS YOU CAN TO THIS WORTHWHILE CAUSE.

 

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