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_outline
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
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
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
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
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_outlineThis week we will discuss an extremely rare type of cancer that is most often associated with younger children. When it affects adults it is more difficult to treat. Our guest this week is Wilder McNemar. Wilder has a decent following on TikTok which is where I found him. You can follow him here: https://www.tiktok.com/@queerpple?lang=en
A Rhabdomyosarcoma is a type of soft tissue sarcoma. A sarcoma is a tumor that starts in the supporting tissues (connective tissues) of the body - for example, bone, muscle, fat, cartilage and ligaments.
Rhabdomyosarcomas grow in the muscles of the body. Rhabdomyosarcoma can occur anywhere in the body.
There are three types of rhabdomyosarcoma which affect different age groups:
Embryonal Rhabdomyosarcoma (ERMS)
This most often affects young children, usually under the age of 6 years. It most often occurs in the head and neck region, especially in the tissues around the eye (called an orbital rhabdomyosarcoma). Embryonal Rhabdomyosarcoma may also occur in the womb, vagina, bladder or the prostate gland. One type of Embryonal Rhabdomyosarcoma is called sarcoma botryoides, which looks like a bunch of grapes and most often occurs in the vagina or bladder.
Embryonal Rhabdomyosarcomas usually spread to surrounding tissues. However, the outcome (prognosis) is usually very good and most children with Embryonal Rhabdomyosarcoma are cured of the cancer.
Alveolar Rhabdomyosarcoma
This tends to occur in older children and young adults. Alveolar Rhabdomyosarcomas (also called ARMS) most often occur in the arms and legs, chest or tummy (abdomen). This is the type Wilder is working with.
ARMS typically affects all age groups equally. It makes up a larger portion of RMS in older children, teens, and adults than in younger children (because ERMS is less common at older ages).
ARMS most often occurs in large muscles of the trunk, arms, and legs.
ARMS tends to grow faster than ERMS, and it usually requires more intense treatment. However, in some cases of ARMS, the cancer cells lack certain gene changes, which makes these cancers act more like ERMS (and allows doctors to give less intense treatment).
Pleomorphic Rhabdomyosarcoma
This tends to occur in middle-aged adults. It is usually treated with chemotherapy, surgery and radiotherapy but treatment is not as effective as for other types of Rhabdomyosarcoma.
We will keep Wilder in our thoughts and prayers and if you are interested in making a donation, there's a link on Wilder's TikTok account: https://www.tiktok.com/@queerpple?lang=en .