loader from loading.io

S17E13 Sturge-Weber Syndrome

PodcastDX

Release Date: 08/27/2024

Complex Illness show art Complex Illness

PodcastDX

On this week's show we are speaking once again with Kristine Hoestermann, the founder of "" and she will be explaining how difficult it has been to get a diagnosis for Ehlers Danlos Syndrome and where that diagnosis took her (Brittle Cornea Syndrome & the BRCA Gene for Breast Cancer are the latest two)  During our discussion I mentioned how I picture complex diagnoses as being like an over-spooled fishing reel, you don't know where to start to unravel the different aspects of the condition, but you know it's all connected! ​ ​ ​Heeeeere's Kristine! Allow me to introduce...

info_outline
The Microbiome show art The Microbiome

PodcastDX

Your gut microbiome is like a microscopic ecosystem within your body, housing trillions of microorganisms that interact with each other and their environment in various ways. These microbes also have a significant impact on your overall health, influencing both your digestive system and other bodily functions. ​ A biome is a distinct ecosystem defined by its environment and inhabitants. Your gut, specifically within your intestines, is a miniature biome teeming with trillions of microscopic organisms. This diverse community includes over a thousand species of bacteria, along with viruses,...

info_outline
S17E13 Sturge-Weber Syndrome show art S17E13 Sturge-Weber Syndrome

PodcastDX

This week we will discuss Sturge-Weber syndrome with a wonderful woman we had the pleasure of meeting previously in Chelsey Peat was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a life-saving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she is currently pursuing a degree in sociology alongside a certificate in Diversity, Equity, and Inclusion. With nearly 40 years of personal experience living with a facial...

info_outline
BiPolar show art BiPolar

PodcastDX

Paris Scobie is a Mental Health Speaker, Host of the top 1% globally ranked podcast, , & Best-Selling Author of her memoir, . Paris launched Live Well Bipolar to use her lived experience to help others overcome the shame, fear and isolation that can so often accompany living with bipolar. She shares how she went from being a patient struggling from inside the walls of a psychiatric hospital newly diagnosed with bipolar to returning to work at this same hospital years later. This unique perspective has allowed Paris to share her experiences on what truly made a difference for her...

info_outline
Common Variable Immunodeficiency show art Common Variable Immunodeficiency

PodcastDX

Today, we have the honor of speaking once again with Sheila Ames, a registered nurse in Northern California who has been diagnosed with a rare type of a primary immunodeficiency known as common variable immunodeficiency or CVID for short. How did she fare during the recent Pandemic?  Tune in now to find out! At the time of her diagnosis she was working as an ICU nurse and her first doctors order was: no more exposure to infectious patients.  This diagnosis not only changed her career dramatically, it led her to following her life's purpose in opening her own health & wellness...

info_outline
Ticks & Lyme Disease show art Ticks & Lyme Disease

PodcastDX

Ticks & Lyme Disease is the topic of the week!  Our guest is Dr. Myriah Hinchey, a Naturopathic physician and Fellow of the Medical Academy of Pediatric Special Needs (MAPS), is a recognized expert in the field of Lyme disease and other complex chronic inflammatory conditions, with over 17 years of specialized experience. As a physician and the Medical Director at TAO, an integrative center for healing, she has successfully guided thousands of patients towards recovery from their complex chronic inflammatory conditions. Additionally, she is the founder and owner of LymeCore...

info_outline
Ehlers Danlos Syndrome in the age of COVID show art Ehlers Danlos Syndrome in the age of COVID

PodcastDX

Squeeze a world of passion, goal driven problem solver and an adventurous triathlete into 5 feet of fun and you get Faith Louise Cooper. Faith Louise grew up in a family of 5 with 2 younger sisters.  At the 12 she was diagnosed with Juvenile Rheumatoid Arthritis, now known as Juvenile Idiopathic Arthritis.  In 2017 she was diagnosed with hypermobility syndrome and was recently changed to Hypermobility Ehlers Danlos Syndrome abbreviated as hEDS.  Her younger sister also battles with hEDS on a daily basis.   Faith Louise joined the swim team in middle school to help manage...

info_outline
Bullying in Young Children show art Bullying in Young Children

PodcastDX

This week we are discussing bullying amongst young children.   CDC defines bullying as any unwanted aggressive behavior(s) by another youth or group of youths, who are not siblings, that involves an observed or perceived power imbalance, and is repeated multiple times or is highly likely to be repeated. Bullying may inflict harm or distress on the targeted youth including physical, psychological, social, or educational harm. Common types of bullying include: Physical such as hitting, kicking, and tripping. Verbal including name-calling and teasing. Relational or social such as...

info_outline
Heavy Metal Poisoning show art Heavy Metal Poisoning

PodcastDX

Heavy metal poisoning (toxicity) is the result of exposure to heavy metals like lead, mercury and arsenic. Heavy metals bind to parts of your cells that prevent your organs from doing their job. Symptoms of heavy metal poisoning can be life threatening and they can cause irreversible damage. ​Heavy metal poisoning occurs when microscopic molecules of metals accumulate within your body after exposure. Heavy metals attach to your cells and prevent them from performing their functions, which causes symptoms that could be life threatening without treatment. ​ What metals cause heavy metal...

info_outline
COVID and LUPUS show art COVID and LUPUS

PodcastDX

Your  is your body's main defense against germs and illnesses. When you have , you're more prone to infections because your immune system works differently than most people's. It becomes overactive and attacks your body itself. ​ Our guest on today's show is another repeat guest,  Amber is a Registered Nurse turned blogger and patient advocate for those with chronic illnesses.  She deals with Hemiplegic Migraines and Lupus and unfortunately she caught COVID at the very start of the Pandemic. 

info_outline
 
More Episodes

This week we will discuss Sturge-Weber syndrome with a wonderful woman we had the pleasure of meeting previously in Season 8 E 20.

Chelsey Peat was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a life-saving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she is currently pursuing a degree in sociology alongside a certificate in Diversity, Equity, and Inclusion.

With nearly 40 years of personal experience living with a facial difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences, and disabilities.

Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. The book explores themes of self-acceptance, self-love, and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections.

Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming a facial difference, but about transforming adversity into advocacy. Her journey serves as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance.

Chelsey Peat

Chelsey Peat 

Sturge Weber Syndrome Advocate | Author | Mentor