Ulysses Neuro Podcast Ulysses

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.

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. 

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. 

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.

Thank you to Audrey, Maria and Matty for sharing their experience with us. 

Below are some resources for further information and support on PANS/PANDAS, along with those that have been mentioned throughout the podcast.


PANS PANDAS UK Foundation: https://www.panspandasuk.or
Facebook support group (Ireland) : https://www.facebook.com/PandasIreland/
Neuroimmune Foundation: https://neuroimmune.org/  - resources for medical professionals.
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.


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. https://bpna.org.uk/?page=pans-pandas



Aspire: https://aspire.care/ - resources tailored to the audience (booklets for schools, booklet for docs).
Peer reviewed article: https://www.dovepress.com/pediatric-acute-onset-neuropsychiatric-syndrome-current-perspectives-peer-reviewed-fulltext-article-NDT?fbclid=IwAR3JdMLGe6O_Gjpi6-OveHzOfRErH4He-EBMfQvt1WPcxjt5tNXxibMkw7g
Caregiver burden index: https://aspire.care/what-is-pans/caregiver-experience/
My kid is not crazy documentary: https://www.youtube.com/watch?v=WJQT9-cQwIw

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. 

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. 

For more information on Angelman Syndrome and the supports available, please visit the following websites:

http://www.angelman.ie/

https://angelmanireland.com/

https://www.angelmanuk.org/

https://www.angelman.org/

https://www.rareireland.ie/

https://www.angelmanclinicaltrials.com/

https://cureangelman.org/

https://cureangelman.org.uk/

Black History Month is an annual observance to remember and recognise important people and events in the history of the African diaspora. It’s celebrated in February in the US and Canada, while in Ireland and the UK, it is celebrated in October. As the father of Black History, Carter Woodson, said, “If a race has no history, it has no worthwhile tradition, it becomes a negligible factor in the thought of the world, and it stands in danger of being exterminated”. We encourage everyone to take the time this month to actively participate by learning about the history and culture of Black people globally, and listening to their experiences. These actions should not just be limited to one month of the year, but should be common practice all year round, helping to promote equality among people of all races.

In this episode we speak to two members of the Black African/Black Irish community, Dr. Immanuel Darkwa and Ms Gladys Otono Atsenokhai.

Dr. Immanuel Darkwa is an experienced start-up founder, lecturer, and researcher at Trinity College Dublin. His research interests lie in innovation models, entrepreneurship, innovation management, and innovation ecosystems.

Gladys Otono Atsenokhai, best known as MC Shakara, is an award-winning events host, comedian and mental health advocate. She also holds a Graduate certificate in Autism Studies and in 2022, won the Sheroes Global Founders Award for using her Platform “Navigating Autism” to help families of autistic individuals and their caregivers understand and navigate autism using simple strategies and her experience.

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. As members of rare disease communities know all too well, 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.


सीडीकेएल-5 कमी अव्यवस्था एक दुर्लभ न्यूरोडेवलपमेंटल अव्यवस्था है जो सीडीकेएल-5 जीन में उत्परिवर्तन के कारण होता है, जिसके परिणामस्वरूप दौरे, बौद्धिक अक्षमता, मोटर और सामाजिक दुर्बलता होती है। जैसा कि दुर्लभ रोग समुदायों के सदस्य अच्छी तरह से जानते हैं, सीडीडी एक अंतरराष्ट्रीय विकार है, जिसके रोगी दुनिया भर में फैले हुए हैं। इसके प्रकाश में, हमने अंतरराष्ट्रीय सीडीडी समुदाय की आवाज को उजागर करने के लिए सीडीकेएल5 पॉडकास्ट की एक श्रृंखला तैयार की है, प्रत्येक एक अलग भाषा में ।

In this special Hindi episode, our host Disha speaks with Jainu Jogani who is the chairperson of CDKL-5 Alliance and father of Reyna who has CDKL-5 deficiency disorder.


इस विशेष हिंदी एपिसोड में, हमारी मेजबान दिशा ने जैनु जोगानी से बात की, जो सीडीकेएल-5 संधि के अध्यक्ष हैं और रेयना के पिता हैं, जिन्हें सीडीकेएल-5 कमी की अव्यवस्था है।

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. As members of rare disease communities know all too well, 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.

Il disturbo da deficienza di CDKL5 (CDD) è una malattia neurologica genetica rara causata da mutazioni nel gene CDKL5 che provoca convulsioni, disabilità intellettive, disabilità motorie e difficoltà sociali. Come i membri delle comunità di malattie rare sanno fin troppo bene, con popolazioni di pazienti sparse in tutto il mondo le comunità attraversano i confini; anche la CDD, quindi, è una malattia internazionale, con pazienti a volte molto lontani fisicamente, ma uniti dalle esperienze legate alla loro condizione. Alla luce di ciò, abbiamo prodotto una serie di podcast CDKL5, ciascuno in una lingua diversa, per amplificare le voci della comunità CDD internazionale.

In this second episode, in Italian, our CEO Massimiliano Bianchi, ourclinical lead Carolina De Pasquale, and our Research Intern and PhD Candidate Fabiana Traini, all accompanied by Barbara Palladini, the general manager of CDKL5 Italia Onlus, ask two families from Italy about their experiences living with Cdkl5 deficiency disorder. It is a fantastic opportunity to hear diverse experiences of living with the same disorder, as they live in different areas in the country.
If you don't speak Italian, 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.

In questo secondo episodio, in italiano, il nostro CEO Massimiliano Bianchi, la clinical lead Carolina De Pasquale e la nostra ricercatrice e dottoranda Fabiana Traini, affiancati da Barbara Palladini, manager dell'associazione CDKL5 Italia, si fanno raccontare da due famiglie italiane come il disturbo da deficienza di Cdkl5 plasma le loro vite. È una fantastica opportunità per ascoltare esperienze di vita che pur avendo a che fare con lo stesso disturbo sono diverse, poiché vivono in diverse aree del paese.
Se non parli italiano, cogli l'occasione per ascoltare il resto dei nostri podcast, dove ascoltiamo sempre i pazienti e gli operatori sanitari per comprendere le loro esperienze vissute e amplificare le loro voci.

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. As members of rare disease communities know all too well, 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.

El trastorno por deficiencia de CDKL5 (CDD) es un trastorno del neurodesarrollo poco frecuente causado por mutaciones en el gen CDKL5, que provoca convulsiones, discapacidad intelectual y deficiencias motoras y sociales. Como bien saben los miembros de las comunidades de enfermedades raras,  CDD es un trastorno internacional, con una población de pacientes dispersa alrededor del mundo. A la luz de esto, hemos producido una serie de podcasts , cada uno en un idioma diferente, para resaltar las voces de la comunidad  CDKL5 internacional.

En este episodio especial en español, nuestras anfitrionas Johana y Fabiana reciben a Sandra Lopez de España y Lisbet Vargas de Colombia, cuyas hijas Urgell y Ruth Sofia padecen  el trastorno por deficiencia de CDKL5. Ellas comparten sus historias personales como parientes de niños que viven con una enfermedad rara, los diferentes desafíos que enfrentan en sus países, así como sus roles como defensores de esta condición en países de habla hispana.

In this special Spanish episode, our hosts Johana and Fabiana are joined by Sandra Lopez from Spain and Lisbet Vargas from Colombia, whose daughters Urgell and Ruth Sofia have CDKL5 deficiency disorder.  They share their personal stories as parents of children living with a rare disease, the different challenges they face in their countries, as well as their roles as advocates for this condition in Spanish-speaking countries.