EDS & Gut Dysmotility
PodcastDX
This week we will discuss the most common type of Ehlers-Danlos syndrome – the hypermobile type (hEDS, formerly also described as EDS type III or joint hypermobility syndrome), this is the type that most commonly presents to gastroenterology services. As connective tissue is present throughout the body, many different structures around the body including the digestive tract can be affected by EDS. Connective tissue is present in the digestive tract and is essential to the passive mechanical movements needed to complete digestion. It has been suggested that any abnormalities in the...
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Gut Dysmotility & Ehlers Danlos Syndrome
PodcastDX
This week we will discuss the most common type of Ehlers-Danlos syndrome – the hypermobile type (hEDS, formerly also described as EDS type III or joint hypermobility syndrome), this is the type that most commonly presents to gastroenterology services. As connective tissue is present throughout the body, many different structures around the body including the digestive tract can be affected by EDS. Connective tissue is present in the digestive tract and is essential to the passive mechanical movements needed to complete digestion. It has been suggested that any abnormalities in the...
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Ketamine for Depression
PodcastDX
This week we will discuss the use of Ketamine for treating Depression. Our guest for this week's show is Karen DeCocker, DNP, PMHNP, CNM Karen DeCocker is the Director of Advanced Practice Providers at Stella overseeing the assessment team. She helps to identify which innovative biological medical treatments & virtual therapies can help relieve symptoms of anxiety, depression, PTSD & traumatic brain injury. After completing a virtual assessment of each patient, Dr. DeCocker and her team analyze the medical, biological, psychological & social factors to provide...
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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...
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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,...
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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...
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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...
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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...
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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...
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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_outlineThis week we are talking about a rare condition, FOXG1. This syndrome is a rare genetic neurodevelopmental disorder caused by a mutation in the FOXG1 gene. FOXG1 gene is one of the first and most important genes for early brain development and when impaired, causes cognitive and physical disabilities as well as medical complexities including epilepsy.
Every child born with FOXG1 syndrome is unique as FOXG1 manifests as a spectrum where symptoms and severity vary between individuals. Our patient data shows characteristics of children with FOXG1 syndrome include: nonverbal, non-ambulatory, experience seizures, feeding problems, cortical vision impairment, movement disorders, and developmental delays. Less-severely-affected FOXG1 children often present with (ASD) Autism Spectrum Disorder as FOXG1 is an autism related gene. FOXG1 syndrome is found equally among both females and males and is geographically more prevalent where diagnostic testing is more advanced. (credits: The FoxG1 Foundation)
Our guest is a mother to a child with FoxG1, Ilissa Reich. Ilissa is a former fashion executive who transformed her career into being a fierce advocate for families of children with special needs.
When her now-3-year-old son, Eli, was diagnosed with FOXG1 Syndrome, a rare brain disorder with no cure, she spun into action and co-founded Believe in a Cure (webelieveinacure.org), a 501(c)(3) non-profit foundation working to develop a treatment for FOXG1.
Founded in 2019, Believe has raised millions of dollars and funded over 40 research and development projects around the world.
long the way, the foundation has partnered with preeminent institutions ranging from the National Institutes of Health to Harvard, MIT, and Tel Aviv University, to biotechnology companies in Europe, Asia, and the United States.
Renowned scientists from industry and academia serve on the scientific advisory board of the foundation, and several notable leaders serve on the foundation’s lay advisory council, including former U.S. senators Joe Lieberman and Paul Kirk, the former CEO of Staples Ron Sargent, mediation czar Ken Feinberg, and many more.
This journey has opened Ilissa’s eyes to the experiences of countless other families who struggle each day, and despite her own anguish, Ilissa endeavored to create a platform for mothers of kids with special needs to build community and offer support.
She has appeared on the Today show, in People magazine, and a host of other outlets profiling her efforts.
A native Long Islander, Ilissa previously worked in fashion at notable brands Tibi, Free People, Splendid, and Alternative Apparel.
She studied business in college at The George Washington University. She lives in Port Washington with her husband, Scott, and their three children.
When asked: 'What has enabled you to be successful?' she responded-
“I always aspire to be a good role model for my children. I want to be someone they’re proud of.”