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 .
Fabry's Lysosomal Storage Disease
Brandi McAlexander was born and raised in Kirtland, New Mexico, a small town ten miles from the Navajo Native American Reservation. She is both Oglala Sioux and White Stick Creek.
She is happily married to a veteran of two tours to Iraq. Together they have a happy full house with seven children; four girls and three boys.
She worked in healthcare as a C-Suite executive for twenty years before deciding to change careers to a Juris doctorate. After receiving her JD in 2019 she opened up her own business "Pass the baby bar". Dedicating her time providing free education to college students pursuing a law degree. As of 2021, she has helped over 200 first year law school students.
Halfway through law school she noticed a major loss of energy and began to believe she had a health issue. After years of tests, false diagnoses and untreated discomfort she was able to confirm the true culprit. During the Covid pandemic in 2020 through a genetic test, she received a confirmed diagnosis of Fabry’s Disease; having inherited both the x and y chromosomes.
Brandi M. | LinkedIn
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
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)
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)
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
Bone and bone marrow
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.
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.
I really enjoy the show. The advice is super helpful.
thank you for the Great podcast!
Please keep inspiring us.
Absolutely love this podcast !
All I have to say is thank you . I appreciate you for sharing your wisdom & advice !