John & Rosemary’s Story
John and Rosemary, lifelong partners with three sons, discovered John’s hereditary amyloidosis in 2020. With courage and calm, they raise awareness, support family screening, and cherish life’s moments. Despite the diagnosis, they stay hopeful and draw strength from each other as they look to the future.
John and Rosemary Kerr both come from Scotland. They met each other in 1985 and got married in 1990 in Donegal in the northwest of Ireland, where John has his family roots. They have three grown up sons.
Several years ago, John started to notice signs of breathlessness. On a visit to Donegal in 2020, he collapsed. Subsequently John learnt the story of how an uncle of his had previously died from hereditary Amyloidosis. After a relative of John’s sent them some information on the disease, Rosemary immediately saw the correlation with John’s symptoms. After going for tests, John was also diagnosed with the disease.
“It's not as rare as people think and it's not rare to us. It's not rare to John who has to go through it."
The couple believe that to raise public awareness, it is vital that there is first better awareness for medical and nursing staff. John also believes that people need to be made aware that there are effective treatments, and that it is not the life sentence that it was before the latest advances.