In 2014 we launched Alkionides UK Birmingham & Midlands in order to support Cypriot patients undergoing treatment for ‘amyloidosis’ at Queen Elizabeth Hospital, Birmingham. Our dynamic Team and our Midland Greek Communities provide moral support, transport and translation services and raise funds for future assistance with accommodation and other essential requirements.
Information on ‘amyloidosis’
Familial Amyloid Polyneuropathy is a rare disorder first encountered in Portugal in 1950.
It runs in families and it is caused by a mutation in the genes of the affected person.
It is a serious disease which, if left untreated, could prove fatal within ten years from the onset of symptoms. It is caused by a change in the DNA which causes the liver to produce an abnormal protein. This circulates in the body and breaks down into smaller strands (fibrils) of amyloid which circulate in the body and form deposits on various organs causing severe damage.
At the beginning the deposit on nerve endings causes the sensation of pain and high temperature. The patient feels pain and a strange sensation in the limbs. The patient becomes unable to feel hot or cold. Deposits on the nerves that control the bowel, the bladder, stomach and sexual organs cause stomach cramps, diarrhoea, constipation and sexual dysfunction. Eventually the motor nerves are affected causing paralysis of the limbs and the patient becomes wheelchair bound. The disease can affect the heart causing arrhythmia and can lead to heart as well as kidney failure.
It runs in families, usually manifesting itself at the age of 30-40 and the afflicted patient has no quality of life. At the moment a liver transplant is the only solution that can control the damage amyloidosis causes in its progression.