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. 

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

“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!

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.

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.

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.

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.