Avsnitt
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Beth Tucker, a 24-year survivor of Chiari, Syringomyelia, and EDS talks about her diagnosis before the digital age, and how her career as a nurse prepared her for her journey as a patient. Beth speaks on self-advocacy, even when unable to stand up or walk. Determined to not be defined by a diagnosis, she uses her own coping strategies of humor and storytelling to create a version of herself, separate from her life as a patient. Starting on TikTok, she grew to over 10k followers and became a stand-up comedian (even featured in a recent movie!). Make sure to tune in to this episode to learn more about Beth and her fascinating life of overcoming adversity.
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Support group (join “The Chiari Champion (Support & Podcast)” and follow “@the_chiari_champion” on Instagram for episode drop dates and sneak peeks)
The comeback is stronger than the setback
Life in Three Acts
Being the helper / receiving help
Pouring from an empty cup
Don’t keep moving the couch by yourself
We ask the people in the Chiari Champion Facebook group:
1. What do you want to say to others facing CM and related disorders?
2. What is the hardest part of having CM or a related disorder?
3. What is something you want the world to know about CM and related disorders?
4. What is a topic you want to hear a tangent about?
5. How has chronic illness made you think about your childhood?
Flare-up box
Chiari Malformation Zero
My body chose violence
Josh Pray (comedian)
Sit with Warriors, the conversation is different
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Saknas det avsnitt?
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“In this episode Noah will explore the following topics, make sure to hear about the Pain Voice, Toxic positivity, and the bystander effect!
Quote of the day!
Best practices in decision making
Chiari decompression calculator
How to view chances in life
How to fight self negative talk (Christie Cox)
What the pain voice is and how to fight it (Christie Cox)
The connection between the mind and body
The power of being present in the moment
Toxic positivity
How to play your cards to win
Fostering relationships (Kristin Means)
Bystander effect!
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Dr. Tomei, a highly regarded medical professional, has been recognized as a Cleveland Top Doctor since 2019. Her remarkable expertise lies in the field of neurosurgery, where she serves as the Division Chief at Rainbow Babies and Children's Hospital in Cleveland, Ohio. With a specialization in Chiari malformation, Syringomyelia, tethered cord, Hydrocephalus, and various related disorders, Dr. Tomei brings extensive knowledge to the table. In this episode, she generously imparts her wisdom on the crucial aspect of collaborating with a team of medical professionals, emphasizing its significance in your personal journey with your diagnosis. By delving into the diagnosis itself, its implications, and the expected outcomes, Dr. Tomei sheds light on the key elements of symptoms, decompression surgery, and follow-ups, which form the backbone of managing Chiari or related disorders. Covering all essential aspects, you will gain insight into recognizing and addressing symptoms, effectively tracking them, understanding the surgical process, and navigating postoperative follow-ups. Immerse yourself in this enlightening conversation with a distinguished expert in the field of Chiari and related disorders, as you acquire invaluable knowledge to empower your medical journey.
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In this episode of the Chiari Champion podcast, we feature an author and advocate who is on a mission to help find answers for others through what helped her heal. Christie Cox battles complex disorders including hypermobile Ehlers Danlos syndrome, POTS, and craniocervical instability. While her knowledge is specialized in EDS, her tips and tricks are applicable to Chiari malformation, Syringomeilia, and all related disorders. Her best-selling book, Holding It All Together When You're Hypermobile, launched in 2022. The book explores hypermobile EDS, it's comorbidities, tips on getting diagnosed, coping strategies, lifestyle changes, and tons of other resources on how to get help. Her goal was to help fellow patients who struggle with a 12+ year average time to diagnosis. She believes EDS and hypermobility are no longer rare, but rarely correctly diagnosed. That is changing due to advances in research, hypermobility is becoming more recognized - thought to be now 1 in every 500. Her book shares a proven path to help you overcome adversity, achieve wellness, and reach peace with your diagnosis. We also speak on medical research that presents tools for earlier diagnosis and treatment. Most importantly, we'll teach you how to foster a positive mindset in the face of chronic illness. Christie Cox definitely helps to provide the tools needed to build confidence and empower yourself with knowledge that will change your life for the better.
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Roman Fenner is a 22 year old research technician at Duke University and is applying to medical school. He was diagnosed with EDS alongside his mom and sister at the age of 9 by a geneticist. Over the next 7 years, in addition to his original diagnosis of Hypermobile Ehlers-Danlos syndrome, he was diagnosed with Cranio-Cervical Instability, Chiari, Tethered Cord, Intracranial Hypertension, POTS, Mast Cell Activation Syndrome, and Dysautonomia. He now hopes to achieve his MD/PhD so he can study EDS, Chiari, and related disorders to then develop newer, and more effective treatments for patients. He has already presented his research on these disorders across the country including conferences at Harvard University, and at Unite@theHill (an event hosted by the Bobby Jones Chiari and Syringomyelia Foundation where patients have the opportunity to lobby congress for increased funding and awareness). Like all of us, Roman had to give up the things he loved after his diagnosis, but he found a new passion in music. This has given him a way to cope with the severity of his disorders, leading him to even dual major in both biology and music in college. He encourages all patients to find something that they can be passionate about while tackling these disorders.
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Kristina Summers, as a 15-year old girl, a Chiari and Syringomeilia warrior became quadriplegic. She was devastated when told there was a 50/50 chance that she would make it off the operating room table. After a successful surgery, this medical miracle became fully able bodied. Twelve years later, she is a kindergarten teacher with a heart of gold. Her past traumatic life experiences allow her to live in the moment, and be grateful for everything she is able to do. I can’t wait for everyone listening to feel the light that she illuminates.
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Kristin Means and her son, Braeden, talk about their daily life with Ehlers-Danlos syndrome. Kristin played collegiate softball and was an active child her whole life, when her EDS pain became overwhelming, she had to modify the way she thought about exercise. To date she has had 38 surgeries! Braeden was a child constantly in pain, but put on a brave face for doctors, causing them to push off a much-needed surgery. He now finds joy in singing and exercising with his family. Yoga, swimming, or walking together is what improves the mental health of this family, decreasing their physical pain. After finding the Bobby Jones Foundation, they feel that they are no longer alone in their battle.
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Dr. Daniel Lichtstein and Father Gabe Ghanoum share spiritual and medical tips for those suffering from rare and uncommon diseases. This episode is full of tips on how to cope, communicate, seek answers and live more productively. Make sure to hear some of their best tips towards the end!
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kaitlyn Esposito and Mary Poppe are both employees of Bobby Jones CSF. On this podcast they will talk about all of the CSF events, and the research the foundation is doing. The most important research the foundation is involved in is highlighted and described as a success scale to better predict decompression surgical outcomes.
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Come join us as we speak to a special mom as she recounts her journey though over 20 of her kids’ surgeries. A mom of two sons with Chiari and related disorders discusses her trials and tribulations and ups and downs of mothering during difficult times of pre and post surgical procedures.
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Noah's mom takes the role of interviewer and dives into Noah's Chiari and syringomyelia diagnoses and how he has maneuvered through the five stages of grieving to his current stage of acceptance. Listen in as Noah discusses his life before diagnosis, the day of diagnosis at age 12, and how he's taken the hardships and is attempting to give back to the Chiari community by raising money for research and awareness.
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Jeff, the head trainer at Orangetheory East Delray, discusses his journey with Chiari Malformation, Syringomyelia, and his decompression surgery. He speaks about the importance of excercise to his quick recovery. He talks about how Orangetheory has helped him both mentally and physically.
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Noah, Andrea, and Cathy continue through their generational gap humor to explore the inner workings and makeup of the Bobby Jones CSF Foundation, and how the foundation has changed and shaped them. Join along as they have a heated acronym competition. LOL
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Speaking with 2 of the 5 nation wide employees of Bobby Jones Chiari and Syringomyelia Foundation. This Foundations goal is to advance knowledge through research to educate the the medical, allied sciences and lay community about Chiari malformation, Syringomyelia, Ehlers-Danlos syndrome, and related disorders. The first episode is always a bit bumpy, but follow this podcast for a part 2. trust me it WILL get better!
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A sneak peek at what's ahead...
