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...
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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...
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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...
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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_outlineToday, 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 online coaching business to help others continue to find and work towards their life's purpose despite the hurdles that life gives us.
Common variable immunodeficiency (CVID) is a primary immune deficiency disease characterized by low levels of protective antibodies and an increased risk of infections. Although the disease usually is diagnosed in adults, it also can occur in children. CVID also is known as hypogammaglobulinemia, adult-onset agammaglobulinemia, late-onset hypogammaglobulinemia, and acquired agammaglobulinemia.
NIAID supports research to determine genetic causes of CVID that may lead to therapeutic approaches to address the disease. Researchers also are exploring how antibody-based drugs may lessen the severity of the condition.
Causes
CVID is caused by a variety of different genetic abnormalities that result in a defect in the capability of immune cells to produce normal amounts of all types of antibodies. Only a few of these defects have been identified, and the cause of most cases of CVID is unknown. Many people with CVID carry a DNA variation called a polymorphism in a gene known as TACI. However, while this genetic abnormality confers increased risk of developing CVID, it alone is not capable of causing CVID.
CVID is also linked to IgA deficiency, a related condition in which only the level of the antibody immunoglobulin A (IgA) is low, while levels of other antibody types are usually normal or near normal. IgA deficiency typically occurs alone, but in some cases it may precede the development of CVID or occur in family members of CVID patients.
Symptoms & Diagnosis
People with CVID may experience frequent bacterial and viral infections of the upper airway, sinuses, and lungs. Acute lung infections can cause pneumonia, and long-term lung infections may cause a chronic form of bronchitis known as bronchiectasis, which is characterized by thickened airway walls colonized by bacteria.
People with CVID also may have diarrhea, problems absorbing food nutrients, reduced liver function, and impaired blood flow to the liver. Autoimmune problems that cause reduced levels of blood cells or platelets also may occur. People with CVID may develop an enlarged spleen and swollen glands or lymph nodes, as well as painful swollen joints in the knee, ankle, elbow, or wrist. In addition, people with CVID may have an increased risk of developing some cancers.
Doctors can diagnose CVID by weighing factors including infection history, digestive symptoms, lab tests showing very low immunoglobulin levels, and low antibody responses to immunization.
Treatment
CVID is treated with intravenous immunoglobulin infusions or subcutaneous (under the skin) immunoglobulin injection to partially restore immunoglobulin levels. The immunoglobulin given by either method provides antibodies from the blood of healthy donors. The frequent bacterial infections experienced by people with CVID are treated with antibiotics. Other problems caused by CVID may require additional, tailored treatments.
To learn more about CVID, visit the National Library of Medicine, Genetics Home Reference CVID site (Credits to NIH)
If you would like to reach out to our guest:
Sheila Ames BSN, RN, PHN
Holistic Health Coach
Business FB page: https://www.facebook.com/JourneyIntoWellness1
PID (primary immunodeficiency) group: https://www.facebook.com/groups/journeyintowellnesspid
Instagram: @journeyintowellnesscoaching
My website: journeyintowellness.net