The mother – child nexus. Knowledge and valuation of wild food plants in Wayanad, Western Ghats, India

This study focuses on the mother-child nexus (or process of enculturation) with respect to knowledge and valuation of wild food plants in a context where accelerated processes of modernization and acculturation are leading to the erosion of knowledge and cultural values associated with wild food plant use, in Wayanad, Western Ghats, India. Wild food plants in this biodiversity hotspot form an important part of local diets and are used as famine foods and medicines. In general, the collection and consumption of these foods are increasingly stigmatized as symbols of poverty and 'tribalness' (equivalent to 'backwardness'). The study, which falls within the discipline of ethnobotany, involves three socio-cultural groups – the Paniya and Kuruma tribes and non-tribals. Further, it examines the impact in the enculturation process of an unusual educational programme sponsored by the MS Swaminathan Research Foundation that is oriented towards creating awareness among children of cultural identity and local biological resources – the study compares children having participated in the programme with those who have not, with their mothers. The process of enculturation is assessed by comparing wild food plant knowledge and values between mothers and their children, and by examining events where knowledge transmission occurs, including collection and consumption. For that, quantitative and qualitative data collection and analysis tools were used, and methods included semi-structured interviews, photo identification and informal interviews of key informants. Results ratify that women are the knowledge holders and are the primary means of knowledge transmission to their children. Nevertheless, fewer children are collecting wild food plants with mothers and learning about them, apparently because of children's lack of time. On the other hand, older people acknowledge that a "change in taste" is occurring among younger generations. In general, there is a simultaneous transmission from mothers to children of contrasting values pertaining to wild food plants: that they are 'good food' but also that they are symbols of low status and poverty, leading to feelings of shame and inferiority. Finally, the study concludes that the educational programme, through a "learning by doing" approach counteracts social stigma and encourages learning among children of all ages and socio-cultural groups, particularly stimulating non-tribal children to learn from tribals

Newly diagnosed and growing subependymal giant cell astrocytoma in adults with tuberous sclerosis complex: Results from the international TOSCA study

International audienceThe onset and growth of subependymal giant cell astrocytoma (SEGA) in tuberous sclerosis complex (TSC) typically occurs in childhood. There is minimal information on SEGA evolution in adults with TSC. Of 2,211 patients enrolled in TOSCA, 220 of the 803 adults (27.4%) ever had a SEGA. Of 186 patients with SEGA still ongoing in adulthood, 153 (82.3%) remained asymptomatic, and 33 (17.7%) were reported to ever have developed symptoms related to SEGA growth. SEGA growth since the previous scan was reported in 39 of the 186 adults (21%) with ongoing SEGA. All but one patient with growing SEGA had mutations in TSC2. Fourteen adults (2.4%) were newly diagnosed with SEGA during follow-up, and majority had mutations in TSC2. Our findings suggest that surveillance for new or growing SEGA is warranted also in adulthood, particularly in patients with mutations in TSC2

Treatment patterns and use of resources in patients with tuberous sclerosis complex : insights from the TOSCA registry

Tuberous Sclerosis Complex (TSC) is a rare autosomal-dominant disorder caused by mutations in the TSC1 or TSC2 genes. Patients with TSC may suffer from a wide range of clinical manifestations; however, the burden of TSC and its impact on healthcare resources needed for its management remain unknown. Besides, the use of resources might vary across countries depending on the country-specific clinical practice. The aim of this paper is to describe the use of TSC-related resources and treatment patterns within the TOSCA registry. A total of 2,214 patients with TSC from 31 countries were enrolled and had a follow-up of up to 5 years. A search was conducted to identify the variables containing both medical and non-medical resource use information within TOSCA. This search was performed both at the level of the core project as well as at the level of the research projects on epilepsy, subependymal giant cell astrocytoma (SEGA), lymphangioleiomyomatosis (LAM), and renal angiomyolipoma (rAML) taking into account the timepoints of the study, age groups, and countries. Data from the quality of life (QoL) research project were analyzed by type of visit and age at enrollment. Treatments varied greatly depending on the clinical manifestation, timepoint in the study, and age groups. GAB Aergics were the most prescribed drugs for epilepsy, and mTOR inhibitors are dramatically replacing surgery in patients with SEGA, despite current recommendations proposing both treatment options. mTOR inhibitors are also becoming common treatments in rAML and LAM patients. Forty-two out of the 143 patients (29.4%) who participated in the QoL research project reported inpatient stays over the last year. Data from non-medical resource use showed the critical impact of TSC on job status and capacity. Disability allowances were more common in children than adults (51.1% vs 38.2%). Psychological counseling, social services and social worker services were needed by <15% of the patients, regardless of age. The long-term nature, together with the variability in its clinical manifestations, makes TSC a complex and resource-demanding disease. The present study shows a comprehensive picture of the resource use implications of TSC

Clinical characteristics of subependymal giant cell astrocytoma in tuberous sclerosis complex

International audienceBackground: This study evaluated the characteristics of subependymal giant cell astrocytoma (SEGA) in patients with tuberous sclerosis complex (TSC) entered into the TuberOus SClerosis registry to increase disease Awareness (TOSCA). Methods: The study was conducted at 170 sites across 31 countries. Data from patients of any age with a documented clinical visit for TSC in the 12 months preceding enrollment or those newly diagnosed with TSC were entered. Results: SEGA were reported in 554 of 2,216 patients (25%). Median age at diagnosis of SEGA was 8 years (range, 18 years. SEGA were symptomatic in 42.1% of patients. Symptoms included increased seizure frequency (15.8%), behavioural disturbance (11.9%), and regression/loss of cognitive skills (9.9%), in addition to those typically associated with increased intracranial pressure. SEGA were significantly more frequent in patients with TSC2 compared to TSC1 variants (33.7 vs. 13.2 %, p < 0.0001). Main treatment modalities included surgery (59.6%) and mammalian target of rapamycin (mTOR) inhibitors (49%). Conclusions: Although SEGA diagnosis and growth typically occurs during childhood, SEGA can occur and grow in both infants and adults