The Dark Side of Patient Advocacy on Social Media
PodcastDX
The dark side of advocacy is that the same social media platforms that help health advocates reach millions can also expose them to relentless trolls, coordinated pile‑ons, and even threats to their safety and careers. Studies of physicians and public‑health advocates show that a large share—sometimes more than half—have been personally attacked online for speaking about vaccines, gun violence, or other health issues, facing abuse that targets not just their ideas but also their gender, race, disability, or identity. What starts as “just comments” can quickly escalate into doxxing,...
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Cancer Care in Transition
PodcastDX
In this week’s episode, “Cancer Care in Transition: Precision Medicine, Immunotherapy, and Patient Choice,” we look at how cancer treatment is changing at the exact moment when patients are trying to move from crisis mode into something like a new normal. Precision medicine now uses a person’s genes, tumor markers, and even lifestyle to match them with targeted drugs or immunotherapies instead of one‑size‑fits‑all chemo, while immuno‑oncology has created a growing group of survivors living with long‑term effects and unique follow‑up needs. At the same time,...
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Various Types of Dementia
PodcastDX
Various Types of Dementia This week on PodcastDX, we’re stepping into the complex world of dementia—not as a single diagnosis, but as a family of conditions that affect memory, thinking, behavior, and independence in different ways. We’ll introduce the most common types of dementia, including Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia, and mixed dementia, where more than one process—often Alzheimer’s plus vascular changes—are happening in the brain at the same time. We’ll also touch on less common causes, such as dementia related to...
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Rethinking DX: A Digital DSM and the Roots of Mental Health
PodcastDX
“Rethinking DX: A Digital DSM” looks at how the Diagnostic and Statistical Manual of Mental Disorders (DSM) quietly shapes almost every part of mental health care—from who gets a diagnosis and insurance coverage to how people understand their own symptoms and identities. In this conversation, Lita and Jean Marie unpack what the DSM actually is, why the current DSM‑5‑TR matters, and how a future, fully digital “DSM‑6” could function as a living document that updates more quickly, links to decision‑support tools, and better integrates real‑world data from electronic health...
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The Next Decade in Medicine
PodcastDX
Over the next decade, medicine won’t just add new gadgets—it will change what it feels like to be a patient. In this episode of PodcastDX, we explore how AI as a clinical co‑pilot, stem cells and regenerative medicine, genomics and precision care, wearables, and hospital‑at‑home models could reshape everyday care. We talk about the promise of earlier detection and more personalized treatment, the risks around bias, privacy, and hype, and why equity and shared decision‑making must stay at the center as technology races ahead. Most of all, we ask how patients and caregivers can be...
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Patients as Partners: Shared Decision Making in Medicine
PodcastDX
This week we are discussing the rise of a new type of health care where the patients play a vital role in their medical care. Patients as partners in care are at the heart of shared decision making (SDM), a model where clinicians and patients deliberately work together to choose tests and treatments that fit both best evidence and the patient’s values and life context. What shared decision making means SDM is a collaborative process in which clinicians contribute clinical expertise while patients contribute their goals, preferences, and lived experience. Core...
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End of Life in Transition: Earlier Palliative Care, Better Conversations
PodcastDX
At a time when modern medicine is allowing people to enjoy longer, fuller lives, mortality is not always a chief concern. But when a serious illness occurs, the topic becomes unavoidable. This became especially clear during the early days of the COVID-19 pandemic when hospitals were overrun with patients, many with grim prognoses. “The pandemic gave all of us a sense that life can be short and there’s the very real possibility of dying,” says , director of the Palliative Care Program at Yale New Haven Hospital. “It opened the door for us to talk more about death and have a...
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Is Mental Health Care Changing Fast Enough
PodcastDX
This week we discuss the current status of Mental Health Care. Mental health care is changing, but most experts argue it is not changing fast enough relative to the need, especially on access, equity, and workforce. Where change is too slow Unmet need is huge. In the U.S., millions with a diagnosable condition still receive no treatment each year; a recent national report notes that many adults with mental illness remain uninsured or unable to access care. Global workforce shortages. Nearly 50% of the world’s population lives in countries with fewer...
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Rehabilitation Reimagined: Technology, Therapy and Independence
PodcastDX
The integration of Artificial Intelligence (AI) into post-injury rehabilitation is transforming recovery paradigms by enabling personalized, adaptive, and efficient rehabilitation pathways tailored to individual patient needs. This podcast reviews the current advances in AI applications that facilitate assessment, monitoring, and optimization of rehabilitation programs following injuries. Through machine learning algorithms, wearable sensors, and predictive analytics, AI enhances the precision of therapy plans, tracks patient progress in real-time, and predicts recovery trajectories. The...
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The Gut Brain Revolution
PodcastDX
The gut–brain revolution is about treating the digestive system and the nervous system as one integrated network instead of two separate organs that happen to share a body. The gut–brain axis is a bidirectional communication system: the brain influences digestion, motility, and gut sensation, while the gut and its microbiota send chemical, neural, and immune signals back to the brain that can shape mood, cognition, and even neurodegeneration. Central to this loop is the vagus nerve, the longest cranial nerve, which carries most of the traffic from gut to brain and...
info_outlineToday, we have with us today, 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. 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