Jamie's Dream Team
PodcastDX
Jamie Holmes-Ward was born with a rare condition known as V.A.T.E.R Syndrome. The Cleveland Clinic says: VATER syndrome, also known as VACTERL association, is a complex condition that affects several parts of the body. VATER (VACTERL) is an acronym that stands for the affected parts of the body including the vertebrae, anus, heart, trachea, esophagus, kidney and limbs. Treatment is symptomatic and unique for each person diagnosed with the condition. Jamie is here to tell her story of overcoming obstacles with grace and creating a nonprofit to help children lift their spirits as...
info_outline
Bullying and Mental Health
PodcastDX
This week we discuss bullying with our guest Chelsey Peat. Chelsey is an advocate for those with facial differences due to Sturge Weber Syndrome. A person that looks different is a prime target for bullies. Bullying is often seen as a schoolyard issue, but its impact on mental health extends into adulthood. Bullied children face increased risks of anxiety, depression, and low self-esteem, with effects that can last a lifetime. Impact of Bullying Bullying occurs when a child uses physical or social power to hurt another. In the short term, it can cause anxiety,...
info_outline
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...
info_outline
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...
info_outline
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...
info_outline
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
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
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
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
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_outlineOn this week's show we are speaking once again with Kristine Hoestermann, the founder of "FindYourRare" 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 myself🦓My name is Kristine (kk). I am the CEO of RARE.™ A brand that was born from my own frustrations following the onset of my symptoms in 2016. It never occurred to me I could wake up sick and never get better. That I would lose everything I knew without noticing.
In the beginning of getting sick I experienced extreme isolation. I felt like I didn’t fit in anywhere. Among symptoms that have yet to have to be attributed to a known disease🧬I have been diagnosed with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease 🆗 That feels like a lot right? but I didn’t look sick and that made it really hard for not only me to accept but also the world around me 🌍
I created RARE.™ as a safe space for myself until I realized so many other rare disease fighters, chronic illness, chronic pain, invisible disease or any human needed that same thing. So I got to work and here we are. Together we can start to bridge the gap 🚧
🆗More about the RARE. Girl behind the brand;
🥄I am a fierce lover of Grey’s Anatomy. Meredith Grey is my person.
🥄You can be sure that I’ll be either listening to Taylor Swift or True Crime.
🥄My favorite book is a Thesaurus
🥄I am a loyal Ticondaroga Pencil user
🥄I love to create & I am a huge nerd
🥄My Wardrobe can easily be mistaken for your grandmas & I love it
Change Starts Here. Connect With RARE.™
📱Share With Us 🔛@findyour rare on all social platforms #findyourrare
🛍 Shop your purpose 🔛 www.findyourrare.com
🎙 Because We Are Strong Podcast 🔛 www.bwspod.com
🗳 VPR Membership Club 🔛 findyourrare.info/vrp
✉️ Reach Out 🔛 [email protected]