by Ulysses
Ulysses Neuro Podcast We give voice, we do science! Ulysses Neuro podcast is about giving voice to members of the public, families and patients facing difficulties with mental health and rare disorders. The team at Ulysses Neuroscience Ltd. will explain the underlying biology and current research, for each specific topic discussed. This podcast aims to advocate, empower and give a voice to the community. Find out more on https://ulysses-neuro.ie/ #Hope #Love #Cure #TogetherWeCan
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2/19/2021
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June 28, 2024
<p> CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder caused by mutations in the CDKL5 gene, resulting in seizures, intellectual disability, motor, and social impairments. Like all rare disorders, CDD is an international disorder with the patient population scattered all over the world. In light of this, we have produced a series of CDKL5 podcasts, each in a different language, to highlight the voices of the international CDD community.In this episode, in Portuguese (Brazilian), our Office Manager Laís Oliveira Lima asks three families from Brazil about their experiences living with CDD. It is a fantastic opportunity to hear diverse experiences of living with the same disorder, as they live in different areas in the country.</p> <p>If you don’t speak Portuguese, take the opportunity to listen to the rest of our podcasts, where we always hear from patients and caregivers to understand their lived experiences, and amplify their voices.</p> <p><br></p> <p>Portuguese: </p> <p><br>Transtorno de Deficiência de CDKL5 (CDD) é um raro distúrbio neurodesenvolvimental causado por mutações no gene CDKL5, resultando em convulsões, deficiência intelectual, e prejuízos motores e sociais. Como os membros das comunidades de doenças raras conhecem muito bem, o CDKL5 é um transtorno internacional, com a população de pacientes espalhada por todo o mundo. Diante disso, produzimos uma série de podcasts sobre CDKL5, cada um em um idioma diferente, para destacar as vozes da comunidade internacional de CDKL5.</p> <p>Neste episódio, em português (brasileiro), nossa gerente de escritório, Laís Oliveira Lima, pergunta a três famílias brasileiras sobre suas experiências vivendo com o CDD. É uma ótima oportunidade para ouvir experiências diversas de quem vive com o mesmo transtorno, uma vez que as famílias moram em diferentes áreas do país.</p> <p>Se você não fala português, aproveite a oportunidade para ouvir o restante de nossos podcasts, onde sempre ouvimos pacientes e cuidadores para entender suas experiências vividas e amplificar suas vozes. </p>
September 8, 2023
<p>In this new episode of the Ulysses Neuro Podcast we spoke with Audrey, Maria and Matty, to give us an insight into what it is like as a parent living with children affected by PANS and PANDAS.</p> <p>PANS, standing for Pediatric Acute-Onset Neuropsychiatric Syndrome is an umbrella term that covers a group of disorders, one of which is PANDAS, standing for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. </p> <p>PANS and PANDAS are complex system wide conditions that are characterised by the sudden, ‘overnight’ onset of neuropsychiatric symptoms in children, which may include obsessive-compulsive disorder, tics, anxiety, food restriction, aggression and cognitive changes including decline in academic ability. Physical symptoms like sleep disturbances and urinary problems may also be present. </p> <p>PANS and PANDAS are little known and poorly treated, and there is currently no cure and a lack of research on the disorders and the associated symptoms. The diagnostic process is complex, and very often the disease is overlooked by the medical community resulting in a very long and complicated journey for the families affected.</p> <p>Thank you to Audrey, Maria and Matty for sharing their experience with us. </p> <p>Below are some resources for further information and support on PANS/PANDAS, along with those that have been mentioned throughout the podcast.</p> <ul> <li>PANS PANDAS UK Foundation: <a href="https://www.panspandasuk.org/">https://www.panspandasuk.or</a></li> <li>Facebook support group (Ireland<a href="https://www.facebook.com/PandasIreland/">) : https://www.facebook.com/PandasIreland/</a></li> <li>Neuroimmune Foundation: <a href="https://neuroimmune.org/">https://neuroimmune.org/</a> - resources for medical professionals.</li> <li>British Paediatric Neurology Association released a 2021 consensus statement on childhood neuropsychiatric presentations with the aim of helping members provide care based on the most accurate and up to date evidence for children with acute neuropsychiatric presentations, including where Paediatric Acute Neuro-Psychiatric Syndrome (PANS) and Paediatric Acute Neuro-Psychiatric Syndrome associated with Streptococcal Infection (PANDAS) are considered.</li> <p><br></p> <p>The statement was updated in 2023 to highlight that all children presenting with acute onset neuropsychiatric symptoms should receive a full medical evaluation. It signposts clinicians to existing international peer-reviewed treatment guidelines. <a href="https://bpna.org.uk/?page=pans-pandas">https://bpna.org.uk/?page=pans-pandas</a></p> </ul> <ul> <li>Aspire: <a href="https://aspire.care/">https://aspire.care/</a> - resources tailored to the audience (booklets for schools, booklet for docs).</li> <li>Peer reviewed article: <a href="https://www.dovepress.com/pediatric-acute-onset-neuropsychiatric-syndrome-current-perspectives-peer-reviewed-fulltext-article-NDT?fbclid=IwAR3JdMLGe6O_Gjpi6-OveHzOfRErH4He-EBMfQvt1WPcxjt5tNXxibMkw7g">https://www.dovepress.com/pediatric-acute-onset-neuropsychiatric-syndrome-current-perspectives-peer-reviewed-fulltext-article-NDT?fbclid=IwAR3JdMLGe6O_Gjpi6-OveHzOfRErH4He-EBMfQvt1WPcxjt5tNXxibMkw7g</a></li> <li>Caregiver burden index: <a href="https://aspire.care/what-is-pans/caregiver-experience/">https://aspire.care/what-is-pans/caregiver-experience/</a></li> <li>My kid is not crazy documentary: <a href="https://www.youtube.com/watch?v=WJQT9-cQwIw">https://www.youtube.com/watch?v=WJQT9-cQwIw</a></li> </ul> <p><br></p>
May 29, 2023
<p>In this episode, hosts Ciara and Clare speak with Crystal McLoughlin to discuss life with her 3 year old son Tomás, who has Angelman Syndrome. </p> <p>Angelman Syndrome is a rare genetic disorder affecting approximately one in every fifteen thousand births. Angelman Syndrome is caused by one of several different types of disruptions to a single gene, UBE3A, situated on chromosome 15, in the region 11-13 of the ‘q’ arm – referred to as 15q11-13. The majority of Angelman Syndrome cases result from a deletion of a segment of the maternal chromosome 15 that contains UBE3A. However, Angelman syndrome can also arise from a mutation in the UBE3A gene, or uniparental disomy, which is when two paternal copies of the gene are inherited from two paternal copies of chromosome 15. The core symptoms of Angelman syndrome include a unique happy demeanour, with frequent laughing and smiling, seizures, and severe developmental delays, for example having little to no speech. Other symptoms include balance and movement problems, abnormal sleep patterns, and feeding problems, particularly during infancy due to difficulties with coordinating sucking and swallowing. </p> <p>For more information on Angelman Syndrome and the supports available, please visit the following websites:</p> <p><a href="http://www.angelman.ie/">http://www.angelman.ie/</a></p> <p><a href="https://angelmanireland.com/" target="_blank" rel="noopener noreferer">https://angelmanireland.com/</a></p> <p><a href="https://www.angelmanuk.org/">https://www.angelmanuk.org/</a></p> <p><a href="https://www.angelman.org/">https://www.angelman.org/</a></p> <p><a href="https://www.rareireland.ie/" target="_blank" rel="noopener noreferer">https://www.rareireland.ie/</a></p> <p><a href="https://www.angelmanclinicaltrials.com/" target="_blank" rel="noopener noreferer">https://www.angelmanclinicaltrials.com/</a></p> <p><a href="https://cureangelman.org/">https://cureangelman.org/</a></p> <p><a href="https://cureangelman.org.uk/" target="_blank" rel="noopener noreferer">https://cureangelman.org.uk/</a></p> <p><br></p>
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