Crusaders disease re-emerges despite liver transplants

Health professionals on Thursday said it was imperative for Cyprus to stay updated on the latest research on amyloidosis, also known as Crusaders’ disease, after it emerged that the disease re-emerges in a significant number of people who have undergone liver transplant.

Familial Amyloid Neuropathy type 1 (FAP 1) is a rare genetic disease dated to the times of the Crusaders. It involves the production of transthyretin by the liver, which then turns into an amyloid, an inappropriately folded protein, affecting the nerves nearby and the nervous system as a whole. People exhibit pains and discomfort in the lower gastrointestinal system. If untreated, the disease can be fatal in ten years.

The disease is treated with the use of the drug Tafamidis. The medicine slows the progression of the disease until a liver transplant can be done.

The House health committee heard that up to 20 per cent of people who were carriers and who had a liver transplant, exhibit symptoms of the disease 10 to 15 years post-surgery.

MP Andreas Kyprianou said that almost all Cypriots diagnosed with Crusaders’ disease have undergone a liver transplant abroad, with the state covering the expenses.

But given this latest information regarding the resurgence of the disease, it was important to stay abreast of medical research, he said.

Theodoros Kyriakides, head of the neurology clinic at the Institute of Neurology and Genetics, confirmed the re-emergence of the disease among people who have had a liver transplant.

The re-emergence causes various complications that are treated symptomatically, as there is no definitive cure yet.

It was up to people to have a DNA test and thus diagnose the disease early, Kyriakides said.

Andreas Savva, the community leader of Pachna, proposed that the DNA test – which costs around €200 – be free of charge.

A number of carriers hail from the village of Pachna, Limassol district.

The disease affects an estimated five in 100,000 Cypriots and is carried from generation to generation.

 

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