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This week we are talking once again with Dan "Dry Dock" Shockley on "Staying Healthy as a Veteran" For Veteran's Day this year we are featuring Dan because even though he has been dealt a hard blow with a hereditary colon cancer gene he is not letting that slow him down one bit! As a matter of fact he is thriving and advocating for others around the globe as a hereditary colon cancer ambassador! Here is some more about Dan:
Dan Dry Dock Shockley, retired U.S. Navy veteran; Operation Desert Storm; Enduring and Iraqi Freedom veteran and a hereditary colon cancer WARRIOR.The U.S. based Colon Cancer Alliance featured his journey for their Veterans Day blog. The below url provided for your reading pleasure:
https://www.ccalliance.org/blog/prevention/dan-drydock-shockley-colon-cancer-warrior-forges-on
Also, in honor of Rare Cancer Day, 30 September, the NORDpod featured him as a special guest.
The below url provided for your listening pleasure:
https://open.spotify.com/episode/6cJJwWXEp34wD8ulFBXNQu?si=m6_V8YwJRwqEAWxXzTp3Cw&utm_source=native-share-menu&dl_branch=1
Additionally, he has been a regular contributor to the UK based Rare Revolution team. They recently invited me to be part of their National Patient Advocate Day campaign. My input can be viewed on Instagram:
https://www.instagram.com/tv/CSwmNDwjuLQ/?utm_medium=copy_link
In closing, here's his latest article which was featured by the Montreal based, RareDIG Organization.
https://www.raredigmcgill.com/HORD/Season-Four
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In this episode we will discuss Halloween Safety during COVID
Fall celebrations like Halloween and Harvest Day are fun times for children, who at one time could dress up in costumes, enjoy parties, and eat yummy treats.
These celebrations also provide a chance to give out healthy snacks, get physical activity, and focus on safety.
Check out these tips to help make the festivities fun and safe for trick-or-treaters and some ideas to replace typical parties during these uncommonly scary times.
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Saknas det avsnitt?
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Silicosis is a lung disease caused by inhaling tiny crystalline particles of silica, or silicon dioxide, often linked to work environments like mining, construction, stonework, and sandblasting. The disease leads to symptoms such as coughing, inflammation, and fibrosis (scarring) and is classified under pneumoconioses, a group of lung conditions caused by inhaling dust. Silicosis can be chronic, developing over more than 10 years of exposure; subacute, occurring in two to five years with heavier exposure; or acute, which can happen within months of intense exposure. Although silicosis is irreversible and has no cure, treatments are available to manage symptoms.
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Jamie Holmes-Ward was born with a rare condition known as V.A.T.E.R Syndrome. The Cleveland Clinic says: VATER syndrome, also known as VACTERL association, is a complex condition that affects several parts of the body. VATER (VACTERL) is an acronym that stands for the affected parts of the body including the vertebrae, anus, heart, trachea, esophagus, kidney and limbs. Treatment is symptomatic and unique for each person diagnosed with the condition. Jamie is here to tell her story of overcoming obstacles with grace and creating a nonprofit to help children lift their spirits as they deal serious medical conditions. Jamie is a dynamo of energy and strength turning an otherwise bleak world into one with rainbows, fairy princesses and smiles. We hope you will help her reach even more children through donations to her 501(c)(3)
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This week we discuss bullying with our guest Chelsey Peat. Chelsey is an advocate for those with facial differences due to Sturge Weber Syndrome. A person that looks different is a prime target for bullies. Bullying is often seen as a schoolyard issue, but its impact on mental health extends into adulthood. Bullied children face increased risks of anxiety, depression, and low self-esteem, with effects that can last a lifetime.
Impact of Bullying
Bullying occurs when a child uses physical or social power to hurt another. In the short term, it can cause anxiety, depression, low self-esteem, sleep issues, and suicidal thoughts. Long-term, bullying victims are at higher risk for anxiety disorders, depression, loneliness, and school avoidance. Bullies themselves may develop antisocial behaviors, and those who both bully and are bullied are at the highest risk for mental health issues like anxiety, depression, and substance abuse.
Responding to Bullying
Bullying can be physical, verbal, social, or virtual. Adults may not always witness it, but they can often see its effects, like a child avoiding school or friends. If you suspect bullying, don’t wait—talk to the child. Ask about their experiences and explore ways to help them feel safe. Encourage positive coping strategies, whether it's standing up for themselves or finding a trusted friend.
Bullying Prevention Strategies
Schools are required to have anti-bullying programs, yet many children still experience bullying. Punishment-based approaches are ineffective. Instead, fostering positive school environments and teaching social-emotional skills can help reduce bullying. Open communication at home is key; children need to know they can talk to trusted adults when they need help.
Conclusion
By supporting children emotionally, adults can help prevent bullying and its long-lasting effects on mental health.
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This week we will discuss the most common type of Ehlers-Danlos syndrome – the hypermobile type (hEDS, formerly also described as EDS type III or joint hypermobility syndrome), this is the type that most commonly presents to gastroenterology services.
As connective tissue is present throughout the body, many different structures around the body including the digestive tract can be affected by EDS. Connective tissue is present in the digestive tract and is essential to the passive mechanical movements needed to complete digestion. It has been suggested that any abnormalities in the connective tissues in the digestive tract are likely to alter the way in which it moves, which could contribute to the range of symptoms experienced by people with hEDS. Connective tissue is also present around the nerves of the digestive tract and abnormalities of this can potentially make the gut more sensitive. It is important to remember that whilst differences in the digestive tract function are likely to be present in hEDS, as yet diagnostic biomarkers have not been identified and more research is needed to better understand the nature and impact of connective tissue within the digestive system, particularly in the other subtypes of EDS.
The digestive tract starts at the mouth, and ends at the anus. Many aspects of the digestive tract can potentially be affected, including both the upper digestive tract (oesophagus, stomach and duodenum) as well as the lower digestive tract (small intestine, large intestine, colon and rectum). We frequently see patients who mainly have symptoms related to either the upper or the lower digestive tract only, and some research studies have found that a significant proportion of people with hEDS experience some kind of gastrointestinal symptoms.
What sort of gut problems can occur? The type, frequency and severity of digestive symptoms can vary greatly from person to person as everyone with hEDS is different. The most frequently reported problems affecting the upper digestive tract are acid reflux and chronic/recurrent indigestion with pain or discomfort and early fullness after meals. The lower digestive tract can present problems such as constipation, abdominal pain, bloating, diarrhoea and a feeling of general abdominal discomfort. Nausea and vomiting can occur alongside any of the symptoms described above.
Delayed gastric emptying / dysmotility
The term dysmotility is often used to describe abnormal movements (e.g. sluggish movements or spasm) of the gut. Some hEDS sufferers can have a sluggish stomach, which means that there is a delay in the emptying of stomach contents into the small bowel, and this is often referred to as delayed gastric emptying. Delayed gastric emptying can range in severity from mild to severe, with the most severe form called gastroparesis (paresis = paralysis). A portion of hEDS sufferers do have delayed gastric emptying, however only a few will be severe enough to be diagnosed with gastroparesis. Patients with a lot of bloating and/or fullness after meals or nausea and vomiting can be tested for delayed gastric emptying, but it is important to note that so far a link between hEDS and gastroparesis has not been categorically established.
In other patients increased sensitivity of the stomach may be a more common problem. Both dysmotility and increased sensitivity of the stomach can be associated with symptoms such as acid or bile reflux, bloating, early fullness during meals/extended fullness after meals and nausea.
Heartburn / reflux
There is some preliminary research that suggests that people with hEDS are slightly more likely to have a small hiatus hernia at the lower end of the oesophagus. This means that the upper end of the stomach slips into the chest cavity through a small hole (hiatus) in the diaphragm (the large muscle that separates the chest cavity from the abdominal cavity). This is quite a common finding and is usually not dangerous, but it can mean that the muscle that closes to stop food or liquid contents of the stomach from escaping back up into the oesophagus is somewhat inefficient, resulting in the acid reflux and/or heartburn symptoms, and this is called gastroesophageal reflux disease (GERD or GORD). However, it is also possible to experience reflux and/or heartburn symptoms without having a hiatus hernia. These symptoms can be associated with dysmotility, increased sensitivity of the oesophagus, or be experienced in isolation with none of these underlying causes.
Bloating
Abdominal bloating is a common symptom in people with hEDS, and although the underlying causes are not fully understood, it is thought that dysmotility may be a contributing factor. Overgrowth of bacteria of the small bowel can occur if there is stagnation within the bowel (i.e. constipation) and this can lead to excessive fermentation of food leading to production of gas, which can also be associated with bloating. A link between hEDS and bacterial overgrowth has not been categorically established and further research is required.
Constipation
Chronic constipation in adults is a common and debilitating problem and it is estimated that around 12 to 19% of the general population experience this, with females and the older population being more prone. Constipation is also common in patients with EDS and it is thought that a sluggish colon and difficulty with evacuation of the bowel are key causes. However there are often many factors inter-linked which can contribute to constipation such as diet, metabolic (hormone) or neurological (nerve) conditions, side effects of prescription medications, particularly opioid-based painkillers, or physical disorders such as prolapse of the bowel.
Rectal and genital prolapse are recognised as potential problems for some people with hEDS, and can be a factor contributing to constipation. Prolapse of the rectum means that the lining (mucosa) of the rectum (called a partial prolapse) or the entire rectal wall (called a complete prolapse) protrudes into the rectum, which interferes with the ability for a stool to be passed. Prolapses of the rectum usually occur during bowel movements, and then recede, but more advanced rectal prolapses can occur upon standing as well. However, in most cases prolapses tend to be small and do not require any active interventions. If a significant prolapse is diagnosed upon testing, and it is thought to be contributing to your gastrointestinal problems, your physician will refer you to a surgeon.
Functional gastrointestinal disorders
Sometimes people with hEDS who have symptoms such as reflux, heartburn, constipation or nausea may not have an identifiable cause of their symptoms on any medical testing and these patients are then given a diagnosis of functional gastrointestinal disorder (FGID). Patients who have symptoms with no underlying cause found account for more than a third of new referrals to gastrointestinal specialists, and so this is a common occurrence. A preliminary study amongst patients who were referred to a specialist because no cause of their symptoms could be found, demonstrated that over a third of those patients met the criteria for joint hypermobility and many of them had previously received a diagnosis of irritable bowel syndrome (IBS) or functional dyspepsia. IBS is the most common example of a FGID, and is characterized by recurrent abdominal pain and frequent changes in bowel habits. Functional dyspepsia is another type of FGID and relates to symptoms of upper abdominal pain, fullness, nausea and bloating, frequently following meals.
(Credits: Ehlers Danlos . Org)
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This week we will discuss the most common type of Ehlers-Danlos syndrome – the hypermobile type (hEDS, formerly also described as EDS type III or joint hypermobility syndrome), this is the type that most commonly presents to gastroenterology services.
As connective tissue is present throughout the body, many different structures around the body including the digestive tract can be affected by EDS. Connective tissue is present in the digestive tract and is essential to the passive mechanical movements needed to complete digestion. It has been suggested that any abnormalities in the connective tissues in the digestive tract are likely to alter the way in which it moves, which could contribute to the range of symptoms experienced by people with hEDS. Connective tissue is also present around the nerves of the digestive tract and abnormalities of this can potentially make the gut more sensitive. It is important to remember that whilst differences in the digestive tract function are likely to be present in hEDS, as yet diagnostic biomarkers have not been identified and more research is needed to better understand the nature and impact of connective tissue within the digestive system, particularly in the other subtypes of EDS.
The digestive tract starts at the mouth, and ends at the anus. Many aspects of the digestive tract can potentially be affected, including both the upper digestive tract (oesophagus, stomach and duodenum) as well as the lower digestive tract (small intestine, large intestine, colon and rectum). We frequently see patients who mainly have symptoms related to either the upper or the lower digestive tract only, and some research studies have found that a significant proportion of people with hEDS experience some kind of gastrointestinal symptoms.
What sort of gut problems can occur? The type, frequency and severity of digestive symptoms can vary greatly from person to person as everyone with hEDS is different. The most frequently reported problems affecting the upper digestive tract are acid reflux and chronic/recurrent indigestion with pain or discomfort and early fullness after meals. The lower digestive tract can present problems such as constipation, abdominal pain, bloating, diarrhoea and a feeling of general abdominal discomfort. Nausea and vomiting can occur alongside any of the symptoms described above.
Delayed gastric emptying / dysmotility
The term dysmotility is often used to describe abnormal movements (e.g. sluggish movements or spasm) of the gut. Some hEDS sufferers can have a sluggish stomach, which means that there is a delay in the emptying of stomach contents into the small bowel, and this is often referred to as delayed gastric emptying. Delayed gastric emptying can range in severity from mild to severe, with the most severe form called gastroparesis (paresis = paralysis). A portion of hEDS sufferers do have delayed gastric emptying, however only a few will be severe enough to be diagnosed with gastroparesis. Patients with a lot of bloating and/or fullness after meals or nausea and vomiting can be tested for delayed gastric emptying, but it is important to note that so far a link between hEDS and gastroparesis has not been categorically established.
In other patients increased sensitivity of the stomach may be a more common problem. Both dysmotility and increased sensitivity of the stomach can be associated with symptoms such as acid or bile reflux, bloating, early fullness during meals/extended fullness after meals and nausea.
Heartburn / reflux
There is some preliminary research that suggests that people with hEDS are slightly more likely to have a small hiatus hernia at the lower end of the oesophagus. This means that the upper end of the stomach slips into the chest cavity through a small hole (hiatus) in the diaphragm (the large muscle that separates the chest cavity from the abdominal cavity). This is quite a common finding and is usually not dangerous, but it can mean that the muscle that closes to stop food or liquid contents of the stomach from escaping back up into the oesophagus is somewhat inefficient, resulting in the acid reflux and/or heartburn symptoms, and this is called gastroesophageal reflux disease (GERD or GORD). However, it is also possible to experience reflux and/or heartburn symptoms without having a hiatus hernia. These symptoms can be associated with dysmotility, increased sensitivity of the oesophagus, or be experienced in isolation with none of these underlying causes.
Bloating
Abdominal bloating is a common symptom in people with hEDS, and although the underlying causes are not fully understood, it is thought that dysmotility may be a contributing factor. Overgrowth of bacteria of the small bowel can occur if there is stagnation within the bowel (i.e. constipation) and this can lead to excessive fermentation of food leading to production of gas, which can also be associated with bloating. A link between hEDS and bacterial overgrowth has not been categorically established and further research is required.
Constipation
Chronic constipation in adults is a common and debilitating problem and it is estimated that around 12 to 19% of the general population experience this, with females and the older population being more prone. Constipation is also common in patients with EDS and it is thought that a sluggish colon and difficulty with evacuation of the bowel are key causes. However there are often many factors inter-linked which can contribute to constipation such as diet, metabolic (hormone) or neurological (nerve) conditions, side effects of prescription medications, particularly opioid-based painkillers, or physical disorders such as prolapse of the bowel.
Rectal and genital prolapse are recognised as potential problems for some people with hEDS, and can be a factor contributing to constipation. Prolapse of the rectum means that the lining (mucosa) of the rectum (called a partial prolapse) or the entire rectal wall (called a complete prolapse) protrudes into the rectum, which interferes with the ability for a stool to be passed. Prolapses of the rectum usually occur during bowel movements, and then recede, but more advanced rectal prolapses can occur upon standing as well. However, in most cases prolapses tend to be small and do not require any active interventions. If a significant prolapse is diagnosed upon testing, and it is thought to be contributing to your gastrointestinal problems, your physician will refer you to a surgeon.
Functional gastrointestinal disorders
Sometimes people with hEDS who have symptoms such as reflux, heartburn, constipation or nausea may not have an identifiable cause of their symptoms on any medical testing and these patients are then given a diagnosis of functional gastrointestinal disorder (FGID). Patients who have symptoms with no underlying cause found account for more than a third of new referrals to gastrointestinal specialists, and so this is a common occurrence. A preliminary study amongst patients who were referred to a specialist because no cause of their symptoms could be found, demonstrated that over a third of those patients met the criteria for joint hypermobility and many of them had previously received a diagnosis of irritable bowel syndrome (IBS) or functional dyspepsia. IBS is the most common example of a FGID, and is characterized by recurrent abdominal pain and frequent changes in bowel habits. Functional dyspepsia is another type of FGID and relates to symptoms of upper abdominal pain, fullness, nausea and bloating, frequently following meals.
(Credits: Ehlers Danlos . Org)
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This week we will discuss the use of Ketamine for treating Depression. Our guest for this week's show is Karen DeCocker, DNP, PMHNP, CNM
Karen DeCocker is the Director of Advanced Practice Providers at Stella overseeing the assessment team. She helps to identify which innovative biological medical treatments & virtual therapies can help relieve symptoms of anxiety, depression, PTSD & traumatic brain injury. After completing a virtual assessment of each patient, Dr. DeCocker and her team analyze the medical, biological, psychological & social factors to provide personalized treatment recommendations across Stella’s advanced protocols such as Dual Sympathetic Reset (advanced stellate ganglion block), Ketamine Infusion Therapy, Transcranial Magnetic Stimulation (TMS), Spravato, integration therapy, and more.
Dr. DeCocker’s priority is the patient’s outcome. She became a nurse practitioner in 2007 after 10 years of hospital nursing experience.
As rates of depression and anxiety have increased dramatically, people have sought therapies outside the standard regimen of oral antidepressants and talk therapy. Beginning in the mid-2010s, more and more doctors started offering ketamine as a treatment for depression. In 2019, the Food and Drug Administration (FDA) approved esketamine as a treatment for forms of depression that haven’t improved with standard antidepressants (like citalopram/Celexa or bupropion/Wellbutrin). (Source: Psychology Today)
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On this week's show we are speaking once again with Kristine Hoestermann, the founder of "FindYourRare" 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 myself🦓My name is Kristine (kk). I am the CEO of RARE.™ A brand that was born from my own frustrations following the onset of my symptoms in 2016. It never occurred to me I could wake up sick and never get better. That I would lose everything I knew without noticing.
In the beginning of getting sick I experienced extreme isolation. I felt like I didn’t fit in anywhere. Among symptoms that have yet to have to be attributed to a known disease🧬I have been diagnosed with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease 🆗 That feels like a lot right? but I didn’t look sick and that made it really hard for not only me to accept but also the world around me 🌍
I created RARE.™ as a safe space for myself until I realized so many other rare disease fighters, chronic illness, chronic pain, invisible disease or any human needed that same thing. So I got to work and here we are. Together we can start to bridge the gap 🚧
🆗More about the RARE. Girl behind the brand;
🥄I am a fierce lover of Grey’s Anatomy. Meredith Grey is my person.
🥄You can be sure that I’ll be either listening to Taylor Swift or True Crime.
🥄My favorite book is a Thesaurus
🥄I am a loyal Ticondaroga Pencil user
🥄I love to create & I am a huge nerd
🥄My Wardrobe can easily be mistaken for your grandmas & I love it
Change Starts Here. Connect With RARE.™
📱Share With Us 🔛@findyour rare on all social platforms #findyourrare
🛍 Shop your purpose 🔛 www.findyourrare.com
🎙 Because We Are Strong Podcast 🔛 www.bwspod.com
🗳 VPR Membership Club 🔛 findyourrare.info/vrp
✉️ Reach Out 🔛 [email protected]
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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, fungi, and parasites.
Your gut microbiome is uniquely yours. Initially, infants acquire their first gut microbes through vaginal delivery or breastfeeding (chestfeeding). As you grow, your diet and other environmental factors introduce new microbes to your biome, though some exposures may also harm and reduce your gut microbiota.
Most of the microorganisms in your gut have a symbiotic relationship with you, meaning you both benefit from the interaction. You provide them with food and shelter, while they offer essential services for your body, including keeping potentially harmful microbes in check.
Think of your gut microbiome as a thriving, diverse garden that you rely on for nutrients and natural medicine. When this garden is healthy and flourishing, so are you. But if the soil becomes depleted, polluted, or overrun by pests or weeds, your entire ecosystem can become unbalanced.
Your gut microbiome interacts with many of your body systems, playing such an active role that some healthcare providers consider it almost like an organ. While some of these interactions are well understood, others are still being explored.
Digestive System Bacteria in your gut help break down complex carbohydrates and dietary fibers that your body can't digest on its own. They produce short-chain fatty acids as byproducts, which are essential nutrients that help maintain a healthy gut environment. These bacteria also synthesize important vitamins like B1, B9, B12, and K, which are vital for your overall health.
Gut bacteria also assist in metabolizing bile in your intestines. After your liver sends bile to your small intestine to help digest fats, bacteria break it down so that bile acids can be reabsorbed and recycled by your liver. This process, known as enterohepatic circulation, is crucial for efficient digestion and cholesterol management.
Immune System Beneficial gut microbes help train your immune system to distinguish between helpful and harmful microorganisms. Your gut, which contains up to 80% of your body's immune cells, plays a key role in clearing out pathogens that pass through daily. Helpful gut bacteria also compete with harmful types for space and nutrients, preventing infections like C. difficile and H. pylori that can result from a weakened gut microbiome.
Short-chain fatty acids produced by gut bacteria are beneficial for your immune system, helping maintain the gut barrier and preventing harmful bacteria and toxins from entering your bloodstream. They also possess anti-inflammatory properties, which are crucial for preventing chronic inflammation and related conditions like autoimmune diseases and cancer.
Nervous System Gut microbes influence your nervous system through the gut-brain axis—a network of nerves, neurons, and neurotransmitters that connects your gut and brain. Certain bacteria produce or stimulate the production of neurotransmitters like serotonin, which send chemical signals to your brain. Researchers are studying how these interactions might impact neurological, behavioral, pain, and mood disorders.
Endocrine System Gut microbes also interact with endocrine cells in your gut lining, making your gut the largest endocrine system organ in your body. These cells secrete hormones that regulate metabolism, including blood sugar, hunger, and satiety. Researchers are investigating the role of gut microbiota in metabolic conditions like obesity, insulin resistance, and Type 2 diabetes.
Your "gut" typically refers to your gastrointestinal (GI) tract, with most people associating it with the intestines. While some gut microbiota are present in your stomach and small intestine, the majority reside in your large intestine (colon). These anaerobic bacteria thrive in the low-oxygen environment of the colon, performing essential functions like breaking down indigestible fibers and producing nutrients.
However, if these bacteria stray beyond the colon, they can be harmful. For example, colon bacteria that enter the small intestine can disrupt digestion, and those that invade the colon wall or escape through a wound can cause infections in your body.
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This week we will discuss Sturge-Weber syndrome with a wonderful woman we had the pleasure of meeting previously in Season 8 E 20.
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 difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences, and disabilities.
Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. The book explores themes of self-acceptance, self-love, and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections.
Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming a facial difference, but about transforming adversity into advocacy. Her journey serves as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance.
Chelsey Peat
Sturge Weber Syndrome Advocate | Author | Mentor
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Paris Scobie is a Mental Health Speaker, Host of the top 1% globally ranked podcast, Live Well Bipolar, & Best-Selling Author of her memoir, Crooked Illness: Lessons From Inside & Outside Hospital Walls.
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 to help others. Paris works to illustrate how everything she told herself she could never have or be is everything she has become today.
Stay connected with Paris and learn more about her work here: parisscobie.com
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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 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
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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 Botanicals, a herbal medicine company focused on providing effective solutions for healing vector-borne diseases. Dr. Hinchey is dedicated to treating patients of all ages, with a specialty in pediatrics, and is also a sought-after speaker, passionately educating healthcare professionals on the pathophysiology of vector-borne diseases and how to successfully integrate functional, herbal, and lifestyle medicine into their practices.
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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 the arthritis. She lives an enriching life and despite what the medical research says she has gone from being in excreting pain when standing for 15 mins to completing a half Ironman a few years back. Faith Louise has great joy and strength in life because of challenges she has faced.
Faith Louise, wanting to have all the tools in her tool box to live an enriching life has decided to study nutrition and is completing her certified holistic nutrition. She has passion for equipping, educating and inspiring other families going through the same thing as well as raising awareness.
In this episode she discusses the difficulties during COVID with hEDS.
Facebook: https://www.facebook.com/cooperfa/. Faith Louise Cooper
Instrgram: https://www.instagram.com/speakingoftri/. Speakingoftri
LinkIn: www.linkedin.com/in/faith-cooper Faith Louise Cooper
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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 spreading rumors and leaving out of the group.
Damage to victim's property.
Bullying can also occur through technology, which is called electronic bullying or cyberbullying. A young person can be a perpetrator, a victim, or both (also known as "bully/victim"). (credits: CDC)
We would like to take a moment to thank the judges at The National Health Information Awards Organization for granting us the Bronze Medal for Media/Publishing for 2024!
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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 poisoning (toxicity)?Several metals can be toxic to your body. The most common toxic metals are:
Lead. Contaminated water from lead pipes, batteries, paint, gasoline, construction materials.
Mercury. Liquid in thermometers, lightbulbs, dental amalgam (“silver”) fillings, batteries, seafood, topical antiseptics.
Arsenic. Topical creams, herbicides, insecticides, pesticides, fungicides, paints, enamels, glass, contaminated water, seafood, algae.
Cadmium. Cigarette smoke, metal plating, batteries.
Thallium. Rodenticides, pesticides, fireworks.
How does someone get heavy metal poisoning?You can get heavy metal poisoning by exposing yourself to heavy metals. Heavy metals form naturally within the Earth’s crust. We interact with small amounts of heavy metals every day, like when you check the temperature of your thermometer, which uses mercury. Heavy metal poisoning occurs when metals get into your body. This can happen if you’re exposed to a large amount of metal including:
Eating a lot of food that contains metals (fish).
Drinking water from older water supply systems.
Working with metals on the job.
Taking medications or supplements with high amounts of metallic elements.
Handling metals or products made with a large amount of metal (like paint or pesticides) without using personal protective equipment.
Most metals that cause poisoning are in a microscopic (molecular) form when they enter your body. They are so small, you won’t be able to see them. Heavy metals can enter your body by:
Absorbing into your skin.
Breathing in or inhaling tiny metal molecules.
Eating or drinking (ingesting) the metal from food or water.
Who does heavy metal poisoning affect?Heavy metal poisoning can affect anyone who has exposure to heavy metals. This most often affects people who:
Drink water from pipes made of older metals (lead).
Work with metals.
Take more than the prescribed dosage of medicine or supplements that contain metal.
Live in an environment with high air or water pollution.
Eat a lot of foods that contain metal.
Consume a non-edible product made with metal (paint).
Children are at a higher risk of heavy metal poisoning because their bodies are still developing and they are more sensitive to the harmful effects of heavy metals.
How common is heavy metal poisoning?The exact rate of occurrence is unknown, but in the United States, heavy metal poisoning is rare since it only affects people who have exposure to heavy metals. The number of people diagnosed with heavy metal poisoning decreased significantly over the last 20 years because of awareness and preventative measures to remove heavy metals from homes.
What does heavy metal poisoning do to my body?Exposure to heavy metals can be dangerous to your health. While we use and interact with metals every day, certain heavy metals are toxic because the molecules that make up the metal damage or negatively interact with the cells in your body that are essential to keep your organs functioning.
Your body has small amounts of metals in it already, like iron, copper and zinc. These metals are important to keep your organs functioning. If you have too much metal accumulated within your body, it can damage your vital organs like your brain and liver. (credits: Cleveland Clinic)
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Your immune system is your body's main defense against germs and illnesses. When you have lupus, 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 Blackburn. 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.
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This week we will discuss kidney dialysis with Christina & Michael. Christina and Michael Gilchrist have quickly become known as "BLIND CHICK LIVING" & "THE CARETAKER" but who could forget Christina's service dog MOOSE!
Christina story: early teens kidney disease diagnosed, early 20's pregnant, doctor missed toxemia, seizures which caused retina and optic nerve imploded causing blindness in total kidney failure, oldest brother donated kidney, unfortunately rejected, asked if she could do home dialysis "NO!! YOU ARE BLIND", in center dialysis 5+yrs plus a young single mother, cadaveric kidney donated, start LIVING and having fun that is where Michael slid into Christina's DM's!!, started rejecting again, INSISTED on doing Peritoneal Dialysis and would not take no for an answer, kept LIVING on PD doing dialysis all over from dry camping with solar panels even got married and did PD on honeymoon and YES! on the back of a motorcycle!!, PD stopped working started home hemo with Michaels help, Michael felt he needed support and not being able to find a support group that fit his needs he started his own. That was the start of LIVING on dialysis!! We have traveled all over the country advocating for dialysis and sharing how we are LIVING!!
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This week we will discuss Red Blood Cell Exchange (RBCX) and Sickle Cell Disease (SCD). Our guest is Carly Newton.
Carly is a Registered Nurse at Terumo Blood and Cell Technologies with over 15years helping Health Care Professionals treating SCD patients with Red Blood Cell Exchange all over the globe. Specializing in apheresis treatments, Carly uses that experience to educate Health Care Professionals on the most effective ways to prescribe Red Blood Cell Exchange.
By focusing on differentiating the different types of transfusion therapies available to SCD patients, Carly has been able to put the Registered Nurse degree they earned at The University of South Australia to good use. Carly may spend their days at the Terumo Lakewood campus, but it’s the patients and helping them live their best lives that gets them up in the morning.
When they’re not at Terumo, Carly loves spending time in the great outdoors and enjoying everything the Colorado Rockies have to offer.
- Visa fler
