96 episodes

PodcastDX is an interview based podcast series in a “peer-to-peer supportive format."

We have found that many people are looking for a platform, a way to share their voice and the story that their health journey has created. Each one is unique since even with the same diagnosis, symptoms and the way each person will react to a diagnosis, is different. Sharing what they have experienced and overcome is a powerful way our guests can teach others with similar ailments.

Many of our guests are engaging in self-advocacy while navigating a health condition, many are complex and without a road-map to guide them along their journey they have developed their own. Sharing stories may help others avoid delays in diagnosis or treatment or just give hope to others that are listening. Sharing is empowering and has a healing quality of its own. Our podcast provides tips, hints, and support for common healthcare conditions. Our guests and our listeners are just like you- navigating the complex medical world. We hope to ease some tension we all face when confronted with a new diagnosis.

We encourage anyone wanting to share their story with our listeners to email us at PodcastDX@yahoo.com .

PodcastDX PodcastDX

    • Health & Fitness
    • 5.0 • 164 Ratings

PodcastDX is an interview based podcast series in a “peer-to-peer supportive format."

We have found that many people are looking for a platform, a way to share their voice and the story that their health journey has created. Each one is unique since even with the same diagnosis, symptoms and the way each person will react to a diagnosis, is different. Sharing what they have experienced and overcome is a powerful way our guests can teach others with similar ailments.

Many of our guests are engaging in self-advocacy while navigating a health condition, many are complex and without a road-map to guide them along their journey they have developed their own. Sharing stories may help others avoid delays in diagnosis or treatment or just give hope to others that are listening. Sharing is empowering and has a healing quality of its own. Our podcast provides tips, hints, and support for common healthcare conditions. Our guests and our listeners are just like you- navigating the complex medical world. We hope to ease some tension we all face when confronted with a new diagnosis.

We encourage anyone wanting to share their story with our listeners to email us at PodcastDX@yahoo.com .

    CVID, Common-Variable-Immunodeficiency

    CVID, Common-Variable-Immunodeficiency

    Today, 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/group

    • 31 min
    Sturge Weber Syndrome

    Sturge Weber Syndrome

    A mother of two from Alberta, Canada, Chelsey Peat was born with a rare condition called Sturge Weber Syndrome. She was born with a large portwine stain birthmark on the left side of her face and has glaucoma in her left eye. She has had multiple surgeries including life saving brain surgery as a baby.

    ​Sturge-Weber syndrome (SWS) is a rare disorder affecting the skin and nervous system. Babies with SWS are born with a birthmark on their face known as a port-wine stain. Port-wine birthmarks are caused by enlarged blood vessels right underneath the skin. People with Sturge-Weber syndrome also have clusters of abnormal blood vessels between the layers of tissue that cover the brain and spine known as leptomeningeal angiomas. They may also have  increased pressure in the eyes known as glaucoma. Other symptoms of SWS may include seizures, muscle weakness, developmental and intellectual disability. SWS is caused by a mutation in the GNAQ gene. The gene mutation is not inherited, but occurs by chance in cells of the developing embryo. SWS is diagnosed based on the symptoms. Imaging studies, such as an MRI or CT-scan, are also used to aid in the diagnosis. There is no one treatment for SWS, so management involves treating the specific symptoms that are present. This may include anti-seizure medications, medications and/or surgery for glaucoma, and low-dose aspirin to reduce the pressure in the eyes and brain. The port-wine birthmark may be treated with various types of laser treatments. The long-term outlook for people with SWS is dependent on the severity of symptoms and varies from person to person. (Credits to The NIH on Rare Diseases) 

    • 22 min
    Sarcoidosis

    Sarcoidosis

    In this episode we will discuss Sarcoidosis with Frank Rivera. Frank is the Founder and President of Sarcoidosis of Long Island,  is a WEGO Health Patient Leader, a Patient Ambassador at Illumina Inc, and a volunteer Patient Ambassador at The Foundation for Sarcoidosis Research.

    ​Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.
    The cause of sarcoidosis is unknown, but experts think it results from the body's immune system responding to an unknown substance. Some research suggests that infectious agents, chemicals, dust and a potential abnormal reaction to the body's own proteins (self-proteins) could be responsible for the formation of granulomas in people who are genetically predisposed.
    There is no cure for sarcoidosis, but most people do very well with no treatment or only modest treatment. In some cases, sarcoidosis goes away on its own. However, sarcoidosis may last for years and may cause organ damage. (Mayo Clinic)

    • 27 min
    Organ Transplant

    Organ Transplant

    Every day, gifts from donors restore health to save and improve lives. As of 2019, 165 million people in the U.S. have registered as donors, but we all need to sign up. There are still 

        men, women, and children waiting for a life-saving organ transplant.  
    ​Organ donation takes healthy organs and tissues from one person for transplantation into another. Experts say that the organs from one donor can save or help as many as 50 people. Organs you can donate include
    Internal organs: Kidneys, heart, liver, pancreas, intestines, lungs
    Skin
    Bone and bone marrow
    Cornea
    Most organ and tissue donations occur after the donor has died. But some organs and tissues can be donated while the donor is alive.
    People of all ages and background can be organ donors. If you are under age 18, your parent or guardian must give you permission to become a donor. If you are 18 or older you can show you want to be a donor by signing a donor card. You should also let your family know your wishes.

    • 19 min
    Tinnitus

    Tinnitus

    Do you hear a constant sound in your ears, even though there is no external source linked to the noise? If so, you’re likely suffering from tinnitus, and you aren’t alone. It’s estimated that more than 50 million Americans suffer from some degree of tinnitus, 16 million Americans experience such severe ringing that they require some type of treatment, and another 2 million suffer from such debilitating tinnitus that it impacts their daily lives.

    Tinnitus is marked by phantom-like ringing, roaring, hissing, buzzing, or clicking noise; in other words, the sound can be heard, yet nothing outside of the ears appears to be making the noise. Those who suffer from tinnitus experience the sound on a regular, if not constant basis. It can affect one or both ears, and be mild or severe. What causes those phantom sounds? Here’s a look at 14 of the most common causes of tinnitus.  

    (credits: https://bit.ly/3mm2qZt)

    • 19 min
    von Hippel-Lindau Chuvash Polycythemia

    von Hippel-Lindau Chuvash Polycythemia

    Our guest this week is Shannon Wyatt.  Shannon has an extremely rare condition called von Hippel-Lindau Chuvash Polycythemia (we will abbreviate to VHL).  Her only symptom that led to finding VHL was that she was diagnosed with kidney cancer at 34 years old, that didn’t even have any noticeable symptoms, it was just an incidental finding on an MRI, but when they took it out, they found it was malignant. A few years later, it was pulmonary embolisms in both lungs after a routine gallbladder removal that pointed to Chuvash Polycythemia after many previous labs had raised suspicion of it.
    Common signs and symptoms for VHL include:
    Tumors and hemangiomas of the kidneys, pancreas, adrenal glands, liver, eyes, brain and spinal cord
    Chuvash Polycythemia is typical know for causing:
    Noticeable symptoms are fatigue, headaches, a reddish complexion, and itching. Dangerous underlying issues are blood clots and high pulmonary blood pressure with low systemic blood pressure.
     

    Chuvash polycythemia is a rare, inherited disorder that is endemic to the Chuvash Republic of Russia, though it does occur in other parts of the world. NIH studies rare diseases not only to help the people who have them, but also to gain insight into gene functions that may benefit people with more common conditions.  Complications of Chuvash polycythemia include blood clots and cerebral hemorrhage. The condition results from a genetic mutation that makes people unable to break down hypoxia inducible factor 2α (HIF2α), a protein that helps stimulate red blood cell production. The inability to degrade HIF2α leads to higher red cell production, even under high-oxygen conditions.

    • 43 min

Customer Reviews

5.0 out of 5
164 Ratings

164 Ratings

guadalupejimenez ,

Always on purpose

I absolutely love this podcast! It’s filled with gems, both new and those that need to be reinforced or looked at from a different perspective. Thank you for your wisdom and for making life easier to navigate. While reminding us to stay light and have fun. ❤️

b.igbossashik1 ,

Love it!

I’ve been listening to this podcast almost daily for the past couple months and it’s helped me tremendously. I wish I discovered it sooner!

sayone3046 ,

Mind-blowing

I listen to many different podcasts, this one is one of the best. Interesting, funny, informative and most of all sound.

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