We are incredibly proud to bring you the second video in our new series that aims to put the spotlight on NF from the perspective of those with a lived experience.
Women with NF1 aged over 35 are at increased risk of developing breast cancer. In honour of breast cancer awareness month, we asked our NF Amabassador Janu to share her breast screening experience and the emotional rollercoaster of finding a lump.
Janu has been fortunate to be part of an Australian-first research study that aims to establish a successful breast screening program for women with NF1, which encompasses:
👉 Screening all women with NF1 who are at an increased risk of breast cancer
👉 Ensuring that screening is done with the most appropriate test
👉 Ensuring the screening study does not cause unnecessary psychological distress
👉 Ensuring these women are linked into a high-risk breast clinic for ongoing surveillance and care.
Part funded by the Children's Tumour Foundation and run out of Royal North Shore Hospital by Associate Professor Mimi Berman, early successes have already resulted in the alteration of the national cancer screening guidelines, which lowers the age of screening commencement from 50 to 35 years and provides direction as to better screening tests for use in these women.
We would like to thank Janu for sharing this personal story with us in the hope of encouraging other women with NF1 to start being proactive with breast screenings now and in the future.
Негізгі бет NF in Focus: The Importance of Breast Screenings for women with NF1
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