My Amyloidosis Story
My name is Sue Birdsall and I am 79 years old. In April 2016 I was diagnosed with AL Amyloidosis affecting my heart. I have intended to write my story for some time. Now seems particularly pertinent as I am currently in remission after 7 long years of chemotherapy.
Though my Amyloidosis journey has not been easy I was fortunate to be diagnosed relatively early. The diagnosis itself was such a shock, definitely out of left centre. I had always tried to live a healthy and active life.
I am a retired Montessori early childhood educator and have lived in Sydney since 1975 with my husband. We have three children and five grandchildren. I grew up in the Australian countryside living in many townships throughout Australia as my family was frequently on the move. I have worked mainly in Sydney, but also in China, Thailand and the Torres Straits practising and promoting Montessori education. Currently my husband and I provide support for the promotion and practise of Montessori education among Aboriginal and Torres Strait Island children.
In managing treatment for my amyloidosis I have had the expertise of very caring and supportive medical people such as a wonderful cardiologist and haematologist at St Vincent’s hospital in Sydney, my GP and other specialists. As well as providing the treatment I needed they answered all my questions with relevant information including technical information and data. This was of fundamental importance in assisting me to have a positive attitude. I was fortunate to be diagnosed at a time when knowledge and the effective treatment of AL Amyloidosis have been increasing significantly, including understanding the individual nature of the disease.
I have had the full support and understanding of my family. My husband has accompanied me to my medical consultations and my daughter and son also when needed. Doing so has helped them as well as me in dealing with changes to lifestyle such a diagnosis brings. They have helped me to keep active and enjoy life with activities such as swimming, gardening and walking and attending plays, films, concerts etc. Meeting with others who have amyloidosis has been therapeutic and the support of AAN has been invaluable.
I have to admit I did not always manage very well even with all this support. My pottery collection has been diminished somewhat by intentional breakages when angry at times that I had contracted such a disease.
I am thrilled to be in remission and very grateful for all the help and support I have received to get to this point.
Sue Birdsall
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