In remembrance of our wonderful Dad, Step-dad, Grandad, Partner, Brother, Uncle, Cousin and Friend.

Howard (Dick) Bird. (1957 - 2022)

Amyloidosis is a rare disease caused by damaging build up of abnormal protein fibres, called amyloid, within the tissues and organs. Amyloidosis can affect any part of the body and lead to life threatening organ failure. It causes the death of about one person in every thousand and there are about 6,000 cases in the UK at any time. The Amyloidosis Research Fund within the Royal Free Charity supports the research, development and patients of the UK NHS National Amyloidosis Centre (NAC) at the Royal Free Hospital. The Centre, established in 1999, is funded directly by NHS Specialised Services to provide diagnostic and management advisory services for all UK amyloidosis patients.

We are hoping to raise some awareness for the UCL Amyloidosis Research Fund. After over two years of suffering with Carpal Tunnel Syndrome in both hands/wrists, numerous tests, doctor appointments and two failed carpal tunnel operations, our dad was diagnosed with Amyloidosis AL. By sharing our story and spreading some awareness we are hoping that more research can be done and that anyone experiencing early symptoms of Amyloidosis, especially carpal tunnel in both hands/wrists, can receive the right diagnosis and treatment. 

Dad had always been a very strong, active sportsman and enjoyed being out and about - up until recent years he was still going on eight-hour walks . In 2019 he was diagnosed with carpal tunnel in both wrists. In early January 2020, the pain became so unbearable he was unable to work. In May 2020, he had surgery in his left hand but, after the three months of recovery time, his hand wasn’t much better and he was still in severe pain. In August 2020, he had surgery in his right hand to try and improve his situation but, again, time passed and there was still no real improvement. 

Come August 2021, Dad talked about feeling generally unwell with lower back pain and breathlessness, this continued, and by the end of November, he had declined drastically and was no longer able to live his everyday life as normal. During the next few weeks, he became suddenly very unwell, he was unable to eat or sleep, and walking from one room to another meant having to sit for five minutes to catch his breath before being able to speak or move again. 

In mid-December, Dad was taken to hospital where they were finally able to give him a diagnosis of heart failure caused by Amyloidosis AL, a couple of days later, we discovered that this had been caused by Bone Marrow Cancer. Amyloidosis AL is particularly aggressive, and to treat it requires many months of chemotherapy. Although the doctors tried to get Dad stronger with steroids, there was no way they could give him chemotherapy as the heart damage had gone too far and he was just too weak. His only chance of survival would have been for him to start chemotherapy in August 2021, or even earlier, but at this time, the severity of his illness hadn't yet been picked up. Early diagnosis is crucial with Amyloidosis AL, but difficult, which is why we are keen to help promote awareness. 

On the 5th of January, myself and my brother visited Dad and, that afternoon, he passed away.