It's Not All in My Head: An HHT Story

02/07/23 • 20 min

This podcast starts with a brief explanation of the genetic condition, Hereditary Hemorrhagic Telangiectasia (HHT) and tells the story of Stephany Zumerling who suffered for years without the correct diagnosis. Her medical journey offers lessons we can all learn from and highlights the importance of finding a doctor who takes the time to listen to their patient and investigate symptoms that don't make sense. The podcast ends with lessons learned from Chapter 9 of our current focus book Suffer Strong: written by Katherine and Jay Wolf.

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Icing Smiles: Baking a Difference

This morning we are starting with a Brain News medical study. A study with the University of Cincinnati will examine the effectiveness of a stroke treatment for patients with a pre-stroke disability, one of the first studies to focus on this population. Our guest today is a spokesman from the sweetest non-profit I know, Icing Smiles, an organization who is baking a difference for children dealing with a difficult medical diagnosis. We will end the podcast with a discussion on the need to redefine beauty from Ch 7, of our focus book, Suffer Strong.
New Stroke Study
Icing Smiles: Baking a Difference

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Scars & Healing

A Pediatric ischemic stroke is a type of stroke that occurs when a blockage, such as a blood clot, reduces or completely stops blood flow to a part of the brain. This causes brain cells to be damaged or die, which can cause long-term disabilities. Our guest today, Mara Yale was introduced to the world of pediatric stroke when her 2nd child was diagnosed shortly after their birth. She has made it her mission to share information to help parents achieve the best possible outcome for their children.
In Chapter 10 of our focus book, Suffer Strong we discuss the need to redefine healing and the truth about our scars.
Guest Youtube: https://www.youtube.com/@pediatricstrokeandbraininjury

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AVM Alliance Podcast - It's Not All in My Head: An HHT Story

Transcript

Raylene Lewis00:00:02.310

Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest Talk News, information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on.