I am a mother of two children and live in Adelaide, Australia. My eldest daughter Tayla now 15, was diagnosed in 2012 with a rare disease – a type of neuroendocrine tumor or (NETS) and then months later with a genetic mutation – SDHB. This condition involves a lifetime of surveillance, as she is at risk of developing not only neuroendocrine cancer but other types of cancer. So far she has had several operations to remove the tumors which are located in her abdomen but there is a risk of metastasis to other parts of the body including the bones, liver, lungs and brain.
Rare Disease Day is a great event and platform for raising awareness around rare diseases.