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A podcast featuring conversations with people in the boating and sailing community with interesting stories, a unique perspective and those making a positive difference. We seek to highlight those working behind the scenes, and those with stories that may have slipped under the radar. chrisheaton.substack.com
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Parenting is hard at the best of times but in the current climate with all of the extra financial pressures it's A LOT! Join parents Caroline Verdon Lisa Mason and Regan Culpan as they try to find cheap and cheerful ways to get through family life.
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How do you find love in your 30s? The twists and turns, and general eye opening craziness of online dating! For anyone who’s single, dating or wants to relive their single life all over again in the luxury of being in a relationship, you lucky devils you! Each week, snoop into the intimate and confidential diary of the real life Bridget Jones.
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1
Unexpected Beginnings: The Neonatal Unit

Leeds Teaching Hospitals NHS Trust

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Having a baby on a neonatal ward is a traumatic experience no matter how well your baby is doing. The wires, the bleeps, the medical terminology can all add up to create an environment that can feel really isolating and worlds away from what you had expected when you first saw your baby on an ultrasound. Through listening to other parents experiences and speaking to doctors, surgeons, mental health workers and everyone in-between, this podcast aims to make you feel less alone and more suppor ...
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From falling off treadmills to getting a lifelong injury from an amusement arcade horse, the lives of Caroline Verdon and Annabelle Buckland are filled with a comedy of errors that will make you feel a lot happier about your own misdemeanors. Rather than never telling a living soul about the time Caroline accidentally created a murder scene at a teddy bear's picnic or the time Annabelle ended up naked on a wakeboard, they decided to tell anyone who'd listen. The pair met whilst working as pr ...
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This podcast explores the impact of pregnancy and baby loss, gives you a chance to hear about people’s personal experiences, and learn more about the work being done to support bereaved families and save babies’ lives. It's hosted by Jen Coates, Director of Bereavement Support and Volunteering at Sands, and Caroline Verdon, broadcaster and journalist. Both have been personally touched by baby loss. You’ll hear from all parts of the baby loss community – from parents, to healthcare profession ...
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A collection of talks, stories, discussions and musical performances by Avatar Meher Baba's mandali and lovers, recorded primarily in Mandali Hall, Meherazad, India. Mandali Hall Talks also provides hundreds of full length talks about Meher Baba that are not in the podcast. They are available at mandalihall.org, under COLLECTIONS on the main menu. RSS Feed: https://mandalihall.net/podcast/mht.xml
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Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions ...
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show series
 
Send us a Text Message. Listen along as I talk with Kadin about High Functioning Autism. Listen to Kadin's diagnosis journey. Find out about the signs and symptoms in both children and adults, How Kadin is getting along in college, and is aspirations for the future. I am trying to turn this podcast into a Nonprofit, and I need board members if you …
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Send us a Text Message. Shari was diagnosed with an acoustic neuroma (a rare benign tumor) In the removal of this tumor she had a stroke. In her book "When Life Gives You Lemons, Make Cranberry Juice" She talks about the removal of this tumor and how it will forever impact her life. Shari sees the Good things in life as the sweet "Cranberries" and …
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Send us a Text Message. Meet Joel Cofounder of Endurant Health. Endurant Health has developed an AI tool to help diagnose rare disease patients. Joel's mother was diagnosed with a rare genetic metabolic condition called Homocystinuria. (HCU). Together with friends who are undergoing similar battles finding proper diagnosis they founded Endurant Hea…
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Send us a Text Message. Join me as I talk to Sky , mother of 3 children. about her daughter Presley's diagnosis with Malan Syndrome. Malan Syndrome is an overgrowth disorder that is considered as ultra rare. Their are only 300 cases of this condition world wide. Join me as I ask about her 8 year journey to diagnosis, Symptoms, Her role in Co-foundi…
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My guest for this episode is no stranger to the podcast. Photographer Matthew Cohen has been on before and he’s back this time to report about a unique project he conceived, researched and executed with stunning results. Most people only ever look at a lighthouse from the outside. Sure, some may take a rare tour or visit where they get a glimpse of…
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This episode looks at the stresses and strains that having a newborn on a neonatal unit can have on Dads and non-birthing partners. We speak to Becky and Dan. When they had baby Alf, he went to neonatal, Becky was very unwell and so was taken to the postnatal ward and Dan was rushing around between the two, trying to be everywhere at once. From fee…
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Christina is the Senior Vice President of Mystic Seaport Museum. Christina shares with us here earliest sailing experiences growing up sailing on Geronimo which belonged to the St. Georges School in Rhode Island. The Geronimo program was one her father developed and those early adventures set Christina up for an educational and life path on and aro…
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Send us a Text Message. In this episode I talk with Christina, Who is the host of Speaking in Spoons and a patient with Primary Sclerosing Cholangitis (PSC), Trigeminal Neuralgia and Hemiplegic Migraines. The aim of this podcast is to connect those with similar conditions, educate medical professionals, and hopefully help find treatments and clinic…
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In this months episode we speak with Consultant Obstetrician Mr. Nigel Simpson about pre-eclampsia and how to prepare for an early birth. We also talk about the importance of breaking down barriers between parents and their babies once they're in a neonatal unit. You can find out more about pre-eclampsia here *** This podcast has been funded by Lee…
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Send us a Text Message. Dubbed the man who died twice and Hod brought back to life, Kevin Hills Story appears in 45 national and international Newspapers and Magazines. Listen along as I talk with Kevin about his medical conditions Calcifylaxis and Multiple Endocrine Neoplasia Type 1(MEN1). You can see the full video on YouTube on my channel Rare C…
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Send us a Text Message. In this episode I talk with Nico who has Congenital Central Hypoventilation Syndrome (CCHS). Nico worked for CCHS Network inc. which his mother started. He revamped the website and planned a global conference for CCHS patients. After losing friends to CCHS he decided to branch out and work with people with disabilities at la…
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Send us a Text Message. In this episode I talk with Layna (parent and advocate with Hope for PDCD https://www.hopeforpdcd.org/) . PDCD is a inherited metabolic condition that has to do with Carbohydrate metabolism. They follow the Keto diet. Layna is responsible for fundraising, education, social media, education, and advocacy. She has a youtube ch…
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Send us a Text Message. Join me as I talk with Author, Student and Patient Charleigh. Charleigh has Gastroparesis (GP) and Post Orthostatic Tachycardia Syndrome (POTS). She is also a student at Pratt University and an Author of 2 books Rule 25: Don't Forget the Target and Demon Scout. In this episode Charleigh talks about her symptoms of both POTS …
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Send us a Text Message. In this episode, I talk with Wendy about her life as a Special Education Teacher, and yoga instructor and her new book "Kiss You Love, Goodbye" Wendy talks about her how she found her knew purpose in life after she wasn't able to teach again. How she adapted to life after teaching. Support the Show.…
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In this episode we talk to Ashley Emmerson who is a Mum to twin girls who were born at just over 33 weeks. Ashley is in quite a unique position as not only has she spent time on a neonatal unit as a parent, she is also a Neonatal Sister at Leeds Children's Hospital. You can find out more about the Leeds Twins and Multiples Pregnancy Service here. *…
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In this episode we talk about the development of the lungs and why it is that so many babies who spend time on neonatal end up needing hospital support in their early years when they pick up coughs and colds. We speak to neonatal mum Charlotte Butterfield who talks about her experiences as well as Consultant Neonatologist Dr Liz McKechnie *** This …
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Send us a Text Message. In this episode Jenifer tells her story about how she was diagnosed with Homocystinuria (HCU) and how she was diagnosed. She will tell where she goes for help and other resources that have helped her along the way. At 55 Jenifer is one of the older HCU patients. At one time they thought that those with Homocystinuria wouldn'…
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This episode is about giving feedback. It can feel daunting when you're on the unit to speak up if you feel uncomfortable or unhappy about something but in actual fact, your voice is very much welcomed and key to making positive changes for parents and babies. Our guest this month is Karen Williams who is the parent and family engagement lead for t…
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Having a baby in neonates can often leave parents feeling stressed, overwhelmed and anxious. Lots of parents have spoken about how they felt robbed of the beautiful newborn period they had been dreaming of but whilst this stage might be different to how you had expected, there are still ways to create magical memories. In this episode Caroline and …
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In 2021 we created Unexpected Beginnings - the neonatal unit podcast. It was a world first that gave an insight into neonatal life from the perspective of the people who matter the most to the patients – their parents. Now thanks to funding from Leeds Hospitals Charity and the support of Leeds Teaching Hospitals NHS Trust we’re back with a brand ne…
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Send us a Text Message. In this episode of Nutrition Equity I talk with Jessica, a patient with both Classical Homocystinuria and Diabetes. Jessica will talk about the complexities of dealing with two conflicting conditons. Homocystinuria requires a low protein diet and Diabetes requires you to watch your carbs and sugar intake. While nuts aren't a…
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Send us a Text Message. In this episode I talk with Heather a parent of a child with Cobalamin G. Cobalmin disorders are named for the order in which they were discovered. Some Cobalmin disorders fall under the Homocystinuria Family, some are Methyl Malonic acidemia's and some are both. They are tested for on Newborn screening, but often missed. He…
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Send us a Text Message. In this episode, Bharat disscuses his personal journey as an Homocystinuria (HCU) patient, his role at taste connections (one of the medical food companies). Bharat is one of the few classical Homocystinuria patients that is also diabetic. He discusses the types of restaurants he likes and the coverage in his state for medic…
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Send us a Text Message. This month is Homocystinuria (HCU) Awareness Month. Today I am joined by Danae Bartke the Executive Director of HCU Network America. Two of the three types of Homocystinuria would be covered if the Medical Nutrition Equity Act were to pass. Currently we are trying to get this crucial bill reintroduced into congress again. In…
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Send us a Text Message. In this episode I talk with Andrew Jablowski Founder of the Short Bowel Syndrome foundation inc. Andrew is a patient advisor and physician advisor for NAIA Pharmacuticals formerly Shire pharmacuticals. Andrew will talk about his life with Short Bowel Syndrome, his job as a physician and patient advisor, and his foundation. Y…
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Send us a Text Message. Listen in as I talk with Valerie a mother of 18 year old Summer who was diagnosed late with Classical Homocystinuria. A rare genetic condition that can be fatal if not caught early. As a result of her late diagnosis Valerie's child Summer had strokes in utero which caused learning disabilities. You can learn more about Homoc…
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Send us a Text Message. Listen as I talk with Brittany, parent of two children with Cobalamin G and the head of the Cobalamin Steering Committee for HCU Network America. Brittany will discuss her reasons for advocacy, her role on the steering committee, and the issues faced by those with Cobalamin Disorders. Support the Show.…
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Send us a Text Message. In this episode of Nutrition Equity I talk with Andrew. A Tyrosinemia patient. Listen along as we learn about Andrew's battles with Tyrosinemia and what it is like to live with this rare condition. Learn about the issues he and others have faced with getting medical foods and formula. What it is like now vs When he was a chi…
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