Episódios
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This week we discuss Abdominal adhesions. These are bands of scar tissue that form between abdominal tissues and organs. Like the name suggests, the tissue can cause your organs to “adhere,” or stick together. Adhesions commonly form after abdominal surgery. Typically, you don’t need treatment unless they cause a complication, like a small bowel obstruction.
Abdominal adhesions are bands of scar tissue that form between the organs in your belly and pelvis. Mainly, they form between loops of your small intestine. They can also form between an organ and the wall of your abdominal cavity.
Your abdominal cavity contains your:
Digestive system, including your stomach and intestines. Female reproductive organs. Kidneys and adrenal glands. Liver. Pancreas. Spleen.Adhesions occur when there’s injury or inflammation in your abdomen. They can even form from normal handling during surgery. In fact, they’re most common after abdominal surgery. As a natural part of healing, scar tissue forms that can cause tissues to stiffen and stick together (“adhere”).
How common are abdominal adhesions?Abdominal adhesions are the most common consequence of having surgery on your abdomen. The majority of people develop adhesions after abdominal surgery. But most people don’t need treatment unless they’re experiencing symptoms.
Adhesions are also the most common cause of a small bowel obstruction. A bowel obstruction is a medical emergency that involves complete or partial blockage in your intestines.
(credits Cleveland Clinic) -
The first human vaccines against viruses were based using weaker or attenuated viruses to generate immunity. The smallpox vaccine used cowpox, a poxvirus that was similar enough to smallpox to protect against it but usually didn’t cause serious illness. Rabies was the first virus attenuated in a lab to create a vaccine for humans.
Vaccines are made using several different processes. They may contain live viruses that have been attenuated (weakened or altered so as not to cause illness); inactivated or killed organisms or viruses; inactivated toxins (for bacterial diseases where toxins generated by the bacteria, and not the bacteria themselves, cause illness); or merely segments of the pathogen (this includes both subunit and conjugate vaccines).
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This week we will discuss possible treatment methods for AFIB.
Atrial fibrillation (AFib) is a common type of irregular heart rhythm (arrhythmia) that occurs when the upper chambers of the heart (atria) beat chaotically and out of sync with the lower chambers (ventricles). This can lead to a variety of symptoms, including:
Palpitations (a feeling of a racing or irregular heartbeat)
Fatigue
Shortness of breath
Dizziness or lightheadedness
Chest discomfort
AFib can increase the risk of blood clots, stroke, heart failure, and other heart-related complications.
Treatment Options for AFibManagement of AFib focuses on controlling the heart rate and rhythm, preventing blood clots, and addressing underlying conditions contributing to the arrhythmia. The choice of treatment depends on the individual's symptoms, overall health, and risk factors.
1. MedicationsMedications are often the first line of treatment for AFib. These include:
Rate-Control Medications
Aim to slow the heart rate to a normal range.
Common drugs: Beta-blockers (e.g., metoprolol), calcium channel blockers (e.g., diltiazem, verapamil), and digoxin.
Rhythm-Control Medications
Help restore and maintain a normal heart rhythm.
Common drugs: Antiarrhythmics like amiodarone, flecainide, or sotalol.
Anticoagulants (Blood Thinners)
Reduce the risk of stroke by preventing blood clots.
Examples: Warfarin, direct oral anticoagulants (DOACs) like apixaban (Eliquis) or rivaroxaban (Xarelto).
2. Ablation TherapyAblation is a minimally invasive procedure aimed at correcting the electrical signals causing AFib. It is typically recommended for individuals who:
Do not respond to or cannot tolerate medications.
Have recurrent or persistent AFib that significantly impacts quality of life.
Types of ablation:
Catheter Ablation
Uses thin tubes (catheters) inserted into blood vessels to deliver energy (radiofrequency or cryotherapy) to destroy small areas of heart tissue causing abnormal electrical signals.
Surgical Ablation (Maze Procedure)
Often performed during open-heart surgery for other conditions, creating scar tissue to block abnormal signals.
Both options have high success rates, but catheter ablation is more commonly performed due to its minimally invasive nature.
Choosing the Right TreatmentDeciding between medications or ablation depends on factors such as:
The severity and frequency of symptoms.
The presence of other medical conditions.
Patient preference and lifestyle.
Consultation with a cardiologist or electrophysiologist is crucial to tailor treatment to the individual’s needs.
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This week we are talking about the Vagus Nerve. The vagus nerve (10th cranial nerve) is a critical part of the autonomic nervous system, responsible for regulating vital functions such as heart rate, digestion, and respiration. It extends from the brainstem (medulla oblongata) through the neck and chest to the abdomen, with motor and sensory fibers allowing communication between the brain and organs. The vagus nerve has two branches—left and right—which overlap in regulating autonomic functions.
Functions and ImportanceCardiac and Pulmonary Regulation: The left vagus nerve primarily innervates the heart, while the right focuses on the lungs, though both contribute to overall regulation.
Digestive System Support: It promotes digestion by increasing blood flow to the gastrointestinal tract and stimulating enzyme release.
Mental Health and Inflammation: The vagus nerve influences mood, anxiety, and stress by connecting to brain areas that regulate emotions. It also modulates inflammation, reducing pro-inflammatory molecules.
Enteric Nervous System Connection: Acting as a bridge between the brain and the "second brain" in the gut, the vagus nerve ensures coordination of digestive processes.
Vulnerability to InjuryDue to its extensive pathway, the vagus nerve is prone to injury from trauma, surgery, infections, tumors, or certain medical conditions. Common causes include:
Trauma: Accidents, falls, or sports injuries affecting the neck or chest.
Surgical Complications: Procedures in the neck, chest, or abdomen can unintentionally damage the nerve.
Medical Conditions: Disorders such as gastric ulcers, reflux, or tumors may affect the nerve. Infections like Lyme disease or meningitis are also potential causes.
Idiopathic Cases: Sometimes, the cause of vagus nerve injury remains unknown, requiring further investigation.
Symptoms of Vagus Nerve InjuryInjury symptoms depend on the severity and location of damage and may include:
Cardiovascular: Rapid or irregular heartbeat, blood pressure changes.
Digestive: Bloating, constipation, diarrhea, or difficulty swallowing.
Voice and Throat: Hoarseness, voice changes.
General: Anxiety, depression, or excessive sweating.
Diagnosis and ManagementDiagnosing vagus nerve damage involves imaging, nerve conduction studies, and blood tests to assess functionality. Early detection is crucial for effective management and preventing complications. Prompt medical intervention can improve symptoms and enhance quality of life.
Understanding the vagus nerve’s anatomy and functions underscores its significance in maintaining overall health, aiding healthcare professionals in diagnosing and addressing related dysfunctions.
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Our guest this week is Christine James. Christine is a mother to two daughters, 19 and 23, a nurse of 8 ½ years and now a chronic pain patient. She was happy to take the time to speak with us in order to bring awareness to a rare and largely unknown disease: CRPS or Complex Regional Pain Syndrome.
As a nurse she worked in the fields of home health, acute medical, psych, long term care, dialysis; and has floated to many other units within hospitals. She has worked at the bedside and have also held supervisory positions. Passionate about her career as a nurse, she hopes to get well enough to work again.
In her 20’s she was diagnosed with degenerative disc disease and osteoarthritis of the spine. Over the course of many years she went through many procedures and treatments due to lumbar disc herniations to include six back surgeries- one of which resulted in permanent damage to her L-5/S-1 nerve root resulting in permanent right foot drop, and one of which was a fusion of L-5/S-1 using four screws and two rods.
After walking 10 years with foot drop and working as a nurse the instability and condition in her right ankle caused constant swelling and pain which led her to seek further treatment. It was found that her joint was arthritic and the bones were collapsing out of position. Her Achilles tendon was also found to be too tight. On March 11, 2024 she underwent a right Achilles tendon release, tendon transfer to improve foot drop. Three weeks later the symptoms of CRPS were recognized by her surgeon and she was diagnosed on April 8, 2024.
Due to her foundation of knowledge as a nurse and due to her drive to get better, she joined multiple social media platforms in search of how to find the treatment she needed and through that process she also began helping others learn about this disease.
When she is feeling healthy, she enjoys many creative hobbies, gardening, and is an avid concertgoer. She has two cats, & lives with her boyfriend in Michigan. They are currently struggling to make it through this difficult time with her health. Financial issues have become bad enough that she sold personal items, used food pantries, and started a gofundme.
She is currently active in Facebook groups and has a TikTok account that she uses to network with others that have CRPS, chronic pain, and chronic illness.
She is grateful to participate in the online community in any way to bring awareness and understanding to CRPS sufferers.
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This week we discuss the field of Functional Neurology with Dr. Alexander Zubkov. Stroke care is complex and does not stop when a patient is discharged from the hospital. As a Functional Neurologist, Dr. Zubkov offers comprehensive follow-up for Stroke care, and focus on prevention through health and wellness. According to his online presence, these are the benefits of such tailored medical care:
Benefits of Integrative Neurology and Functional Medicine Identify the root cause of your illness Decrease excessive inflammation Balance your brain Reversal of cognitive decline Improve your overall health State of the art laboratory testing Nutritionist evaluation Short and long-term health planning Physician-grade supplementDr. Zubkov believes that we are facing an epidemic of unhealthy lifestyles and environments, but there is hope for change. You have the power to make positive changes in your life, and it doesn't have to be a sacrifice of joy and fun. With one voice and one mind, we can learn to eat real food, exercise, and rest to achieve radiant health.
While crisis care is excellent in acute cases, the current model of healthcare fails in preventing and treating chronic diseases. However, since the early 90s, there has been a wealth of rock-solid studies proving that many chronic illnesses are preventable. The problem is that the abundance of information can lead to confusion, without the specific context for each individual.
Core Beliefs:Dr. Zubkov knows that each person is unique, and it's not enough to simply tell them what not to eat. By understanding their personal story and history, teaching them, and backing up strategies with proper laboratory assessments, we can make meaningful changes towards a healthier life. So don't lose hope - you have the power to improve your health and wellbeing.
Dr. Zubkov founded Mind Body Neurology, PLLC to help patients to recover from neurological diseases through holistic approach. -
The winter season brings cold temperatures and severe weather conditions that create many hazards for individuals working in areas that experience these conditions. Even if you work indoors, winter weather still poses many hazards for you, such as driving into work in bad weather or walking through an icy parking lot to get to your building. It is important to recognize and address the hazards the winter season brings with it.
During extremely cold weather or winter storms, staying warm and safe can be a challenge. Winter storms can bring cold temperatures, power failures, loss of communication services, and icy roads. To keep yourself and your loved ones safe, you should know how to prepare your home and your car before a winter storm hits.
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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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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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