Help Alissa Harvey (Allan) fight Amyloidosis


Our much loved friend and colleague Alissa Allan- or Harvey as we all know and love her- needs our love and support.  Alissa and her twin sister Briana both suffer from a very rare genetic condition called Hereditary Lysozyme Amyloidosis, which has only been found so far in a few families worldwide.

Alissa is currently the only patient in the world with this degenerative condition presenting in her lungs.  Quite simply, her lungs can’t function properly.  There are no treatments available, and her main specialists are based in London.  Alissa is supported by her doting husband Tim and her gorgeous boy, Ruben.

What is Amyloidosis?
Amyloidosis is a rare disease caused by abnormal deposition and accumulation of proteins in the tissues or organs of the body. Amyloid deposits are primarily made up of protein fibres known as amyloid fibrils. These amyloid fibrils are formed when normally soluble body proteins aggregate (clump together) and then remain in the tissues instead of safely going away. About 30 different proteins are known to form amyloid deposits in humans.

There's no cure for amyloidosis, which, when severe, can be life-threatening; but treatments can help you manage symptoms and slow production of amyloid protein accumulation.

Hereditary lyzosyme amyloidosis (ALys) is extremely rare and one of the rarest types of hereditary systemic amyloidosis - it has only been found so far in a few families (including the Harvey’s!). Lysozyme is an enzyme produced by liver cells and blood cells.  It is believed to play a role in fighting bacteria.

The mutations in the ALys gene associated with ALys amyloidosis cause the normally soluble lysozyme protein to fold abnormally and form amyloid fibril. It is caused by inheritance of an abnormal copy of a gene, leading to lifelong production. This inherited gene was the reason Alissa and Tim were determined to minimize the possibility of passing the condition on to any children - and engaged in a special type of IVF called pre-genetic diagnosis. The result: a beautiful, healthy baby boy.

Liver rupture in patients with ALys amyloidosis has been successfully treated with emergency liver transplantation, with good outcomes, despite evidence of amyloid recurrence after transplant. Patients with end stage kidney failure have undergone kidney transplants with excellent outcomes.

Who are we? We are Alissa’s friends and colleagues, Kelly Ferguson, Jo Rogerson and Hayley Turner. We work for a government ambulance organisation (which we are not allowed to mention specifically as this is a private initiative for our friend and colleague and not an official venture). All funds raised will be given directly to Alissa and her family (husband Tim and son Ruben), to assist them to travel to London to see the specialists in this rare field to discuss treatment options, and also to ease the financial burden of multiple sick days, medical tests and specialist appointments. We would also like to take this opportunity to thank each and every one of you for supporting this amazing family xx