Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia’s Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where ~1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants’ preferred language(s). Participants described their experience of living with MJD, from ‘knowing about MJD’, ‘protecting yourself from MJD’ and ‘adjusting to life with MJD’. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. ‘Staying strong on the inside and outside’ (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: ‘Exercising your body’, ‘having something important to do’, ‘keeping yourself happy’, ‘searching for good medicine’, ‘families helping each other’ and ‘going country’. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care.

Endometriosis is a common problem in women in their reproductive years but is much less frequent in the postmenopausal state, with an incidence of around 2%. Malignant change in endometriotic deposits was first described by Sampson in 1925. Since then, the risk of malignant transformation has been well documented but continues to be a relatively rare occurrence, occurring mainly (79%) in the ovary. The vast majority of women with this condition are premenopausal or taking exogenous hormones. We undertook a retrospective review of hospital notes identified from our database of endometriosis cases undergoing surgery. We identified two cases of benign disease and two cases of endometriosis-associated adenocarcinoma presenting in menopausal women. The first patient presented with haematuria and rectal bleeding. At laparotomy, she was found to have a substantial endometriotic nodule involving the bladder and sigmoid colon. The second patient presented with abdominal pain and dyschezia. She was found to have uterosacral disease at laparoscopy. The third patient presented with an inoperable endometrioid adenocarcinoma, having previously had a total abdominal hysterectomy and bilateral salpingooophorectomy. The fourth patient presented with pain and an abdominal mass. At laparotomy there was stage IV endometriosis, and histology subsequently revealed an ovarian endometrioid adenocarcinoma. In conclusion, endometriosis can arise de novo in the menopause, perhaps triggered by peripheral conversion of androstenedione or as a consequence of hormone replacement. Persistence of endometriosis past the menopause raises the risk of malignancy. Future research will help to differentiate between those who require radical treatment and those who can be managed conservatively.