Helping people with NF make decisions on parenthood The clinical genetics research team at Royal North Shore Hospital is behind a nationwide survey to better understand how people with neurofibromatosis make important decisions around having children.
Hope Foundation, researchers are hoping to create resources and recommendations to help people with neurofibromatosis with reproductive decision-making. The RNSH Clinical Genetics Department provides a national neurofibromatosis skin treatment clinic, a statewide complex management service for adults, and also cares for children in the Northern Sydney and Central Coast local health districts with the condition. “The Australian government has recently released funding to support pre-implantation genetic testing. It has been recommended women with neurofibromatosis (or women whose partners have it) should be offered access to in-vitro fertilisation (IVF)/pre- implantation genetic testing, but there are no specific tools to assist families with neurofibromatosis with this process despite the considerable complexity involved,” Yemima said. “As part of this study we hope to raise awareness of all available options.” The study is open to people with neurofibromatosis and their partners, living in Australia who are aged over 18. The study can be accessed here: https:// redcap.link/nfsurvey
Adults with neurofibromatosis face considerable challenges when making
decisions about having children, with their offspring having a 50 per cent chance of inheriting the disorder from an affected parent, but no certainty as to how severely their children may be affected. RNSH’s Clinical Genetics Head of Department Associate Professor Yemima Berman said there was little data on neurofibromatosis in pregnancy to assist families in reproductive decision-making. “Neurofibromatosis is a complex disorder, involving the development of tumours affecting different parts of the body. It is a progressive condition where symptoms tend to develop and worsen over time, but the severity can vary greatly, even within families” she said. “People living with the condition can develop debilitating disfigurement due to the development of skin neurofibromas; affecting their mental health, social functioning and the ability to seek employment.” With funding support through the Flicker of
16 Days of Activism Against Gender Based Violence Two in five women have experienced violence since the age of 15. One in four women will experience this violence as physical violence and emotional or economic abuse from their partner. These alarming statistics were at the forefront of activities held across the district
“This includes a commitment to routinely screen for domestic violence in mandatory and optional settings. The PARVAN Service provides direct support to victims of domestic violence and provides consultation and support to staff across the district in identifying and responding to clients experiencing violence.”
to mark the 16 Days of Activism against Gender Based Violence, running between 25th November to 10th December 2023. NSLHD staff were called to ‘Unite!’ to end violence against women and girls, under the global theme that encourages increased awareness, activism and systemic change. NSLHD Chief Executive Anthony Schembri said domestic violence was a public health issue that placed significant burden on the community. “At NSLHD, we have already committed to improving outcomes for women and girls experiencing violence,” he said.
Stall at RNSH for 16 Days of Activism against Gender Based Violence
WWW.NSLHD.HEALTH.NSW.GOV.AU
11
Made with FlippingBook - professional solution for displaying marketing and sales documents online