Publications

Our Publications Offer a Choice
 Learn the Way You Choose: Print, Audio, Video & Live with
Options for Free & Premium Content 

We understand everyone learns and processes information differently and has access to restricted resources. So we offer a choice.

We provide both our own custom curated content and share other people's insights including medical research RSS feed alerts so you can get to the good stuff faster. As we create new content, we will continue to publish online or we link to other resources we've checked out, trust and have vetted as valuable to the EDS patient community. While many of our materials are open access and free to everyone, some are paid as premium content for our club members-only access. The choice is yours.

Check out the list below of free stuff, tips, with pages and resources where we offer tons of free ideas to help along the EDS journey with source links.  But if you're in search of more information, in-depth reports where we've simplified the complexities of chronic illness and guarantee them to be credible based-on published medical research or reviewed by experts -  you might consider joining our low cost Connective Club membership. It's less than a single co-pay and good for an entire year!  After-all, it is your health - aren't you worth the investment? Health is your true only wealth in this world and the most valuable asset you will ever have! You are worthy so invest wisely. Here's a sample of some of our free stuff open to all now. 

Watch the EDS Empower Hour 

Want more? Join the Connective Club

Members have access to EDS-related tools, templates and our thought-provoking private podcasts. With options to join our community monthly connection calls for members only and so much more including a community forum to make new friends and ask questions of people who get it. Plus, it's available in different formats for neurodivergent learners to process their way.

The Connective Club offers many different types of content for people with various spectrums of capabilities and/or neurodivergent brains so everyone can access their most suited format to grow in your own way at your pace. The materials offered to members includes these types of resources shown below. 

eBooks & Guides

Content creators, writers and patient advocates have been collaborating to bring the EDS community insights on the topics most requested in our surveys. We're proud to showcase a suite of ebooks and patient guides written by patients with input from medical experts so you can count on them. Plus, they get it so you know it will be easy-to-comprehend reports without medical jargon who need to Google after. 

Video & Shorts

We host webinars and live Q&A sessions and we also capture the best of some great medical expert interviews. They are all available to watch at your own pace in full-length form. But if you're dealing with memory or attention span loss or simply no time? Catch the highlight reels in our own curated DocToks, our curated expert video clip shorts cutting to the chase of what you need to know now. 

Audio & Podcasts

Let's face it, some of us have a hard enough time living our daily lives that we need to simplify this task of learning about our condition. So instead, rest, put your feet up and listen to news articles, short books and other thoughts trending in healthcare on our private podcast for members only. We discuss controversy, life hacks and so much more. Dial in with expectations to learn something new or challenge the status quo of today's health industry thinking.

Templates & Tools

We have a goal to help teach every patient how to better self-advocate on their own to better empower themselves. But as you likely know, with ever-present brain fog, that means sharing useful templates and/or tools that can assist in the written preparation required for any upcoming doctor appointments, insurance appeals call, or accommodations requests letters you might need and more. Samples, planners and templates will keep you organized and on track.

Common Symptoms & Comorbidities Covered in Club Content

Joint Hypermobility

Early warning signs to watch for hypermobility:

  • Frequent or unexplained injuries
  • Easy bruising
  • Chronic fatigue, especially during teenage years
  • Hyperflexible joints, or double-jointed
  • Soft, stretchy skin
  • Athletic prowess in sports like gymnastics or swimming
  • Often tall and thin physique
  • Preference for sitting in positions like pretzel style or curled up
  • Persistent allergies or sinus issues
  • Digestive irregularities
  • Hypersensitivity to sensory stimuli
  • Learning challenges or cognitive patterns resembling ADHD or autism
  • Emotional regulation difficulties
  • Curled sleeping positions
  • Indications of scoliosis or poor posture
  • Hyperextended knees, known as "banana knees"
  • Flat feet
  • Family history of autoimmune diseases

Dysautonomia & POTS

Dysautonomia refers to a group of medical conditions that cause a malfunction of the autonomic nervous system, which controls the involuntary functions of the body. Here are some common early warning signs and symptoms to watch for:

  • Heart Rate Variability: Unexplained changes in heart rate, such as rapid heartbeat (tachycardia) or slow heartbeat (bradycardia), especially when standing up from a lying or sitting position.
  • Blood Pressure Fluctuations: Sudden drops in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, lightheadedness, or fainting.
  • Temperature Regulation Issues: Difficulty regulating body temperature, leading to episodes of sweating excessively or feeling very cold without reason.
  • Digestive Problems: Gastrointestinal issues such as nausea, constipation, diarrhea, and abdominal pain, which are often intermittent and unexplained.
  • Fatigue: Persistent exhaustion that doesn't improve with rest and is disproportionate to activity levels.
  • Exercise Intolerance: Difficulty or inability to sustain physical activity due to rapid fatigue, palpitations, or feeling unwell.
  • Visual Disturbances: Problems with focusing or blurring of vision, especially related to changes in posture.
  • Tremors or Shakiness: Unexplained tremors or feeling shaky, particularly during physical activity or stress.
  • Urinary Problems: Issues such as urgency, frequency, or incomplete bladder emptying.
  • Syncope or Near Syncope: Episodes of fainting or feeling like you might faint.
  • Cognitive Impairment: Difficulty with concentration, memory, and maintaining attention, often described as "brain fog."

If you or someone you know experiences these symptoms, it's important to consult a healthcare provider who is knowledgeable about dysautonomia for proper assessment and management.


Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia that primarily affects the flow of blood through the body when changing positions from lying to standing. Here are some common symptoms to watch for in POTS:

  • Increased Heart Rate: A significant increase in heart rate—typically more than 30 beats per minute or exceeding 120 beats per minute total—within 10 minutes of standing.
  • Dizziness or Lightheadedness: Feeling dizzy or lightheaded upon standing, which can persist or recur frequently.
  • Syncope or Pre-syncope: Fainting or feeling like you might faint, especially in response to standing or prolonged upright posture.
  • Fatigue: Chronic, extreme fatigue that interferes with daily activities and does not improve with rest.
  • Palpitations: Feeling a strong or rapid heartbeat, especially when standing up or during physical activity.
  • Exercise Intolerance: Difficulty engaging in physical activity due to rapid onset of symptoms like heart palpitations, fatigue, and dizziness.
  • Nausea: Gastrointestinal disturbances such as nausea, which can be exacerbated by being upright.
  • Tremors: Shakiness or trembling, especially noticeable when standing or during physical exertion.
  • Concentration Issues: Problems with focusing or thinking clearly, often referred to as “brain fog.”
  • Blurred Vision: Temporary vision issues, such as blurring or tunnel vision, particularly associated with changes in posture.
  • Headaches: Frequent headaches or migraines, which can be exacerbated by physical activity or changes in position.
  • Temperature Regulation Issues: Difficulty regulating body temperature, leading to feelings of being overly warm or cold without apparent environmental reasons.
  • Sweating Abnormalities: Episodes of excessive sweating or the inability to sweat normally.
  • Chest Discomfort: Sensations of discomfort or pain in the chest, which are not necessarily related to heart disease but can be distressing.

These symptoms can have a significant impact on quality of life, and managing POTS often requires a combination of lifestyle changes, dietary adjustments, and sometimes medication. Consulting with a healthcare provider familiar with POTS is crucial for an accurate diagnosis and appropriate treatment plan. Typically a expert cardiologist is the provider to seek guidance, evaluation and treatment from with either condition and can be very challenging to find. See the nonprofit Dysautonomia International for directories and resources. 

How to Tell The Difference

Comparing dysautonomia in general with POTS helps to understand their differences and how POTS is a subset of the broader category of dysautonomia. Here's how they differ and what specifically points toward POTS:

General Dysautonomia
Dysautonomia encompasses a range of conditions that affect the autonomic nervous system, which controls involuntary bodily functions such as heart rate, blood pressure, digestion, and temperature regulation. Symptoms can be broad and vary widely depending on which part of the autonomic nervous system is affected. Common signs include:

  • Variable Heart Rate and Blood Pressure: Fluctuations that aren’t limited to positional changes.
  • Temperature Regulation Issues: Problems with feeling too hot or too cold.
  • Digestive Disturbances: Including irregular bowel movements, nausea, and abdominal pain.
  • Urinary Problems: Such as urgency and frequency.
  • Sexual Dysfunction: In both men and women.
  • Vision Problems: Including difficulty adjusting focus from one distance to another.
  • Overall Fatigue: Often profound and impacting daily function.

What Looks More Like POTS
If the symptoms are predominantly triggered or worsened by standing up and are accompanied by a significant and measurable increase in heart rate, it points more towards POTS. The specific criteria of heart rate increase upon standing is distinctive for POTS, distinguishing it from other forms of dysautonomia where symptoms may be more varied and not as closely linked to posture.

Both conditions require careful management and medical oversight, but the approach may differ significantly due to the underlying mechanisms of each condition. For accurate diagnosis and management, individuals experiencing these symptoms should consult with healthcare providers who specialize in autonomic disorders.

Mast Cell Activation Disorders (MCAS)

Mast cell disorders, including Mast Cell Activation Syndrome (MCAS), involve the improper release of mast cells' chemical contents, which can affect multiple organs and lead to a range of symptoms. Understanding the signs and symptoms can help in recognizing and managing these conditions effectively.

General Mast Cell Disorders
Mast cell disorders encompass a variety of conditions related to abnormal accumulation or activation of mast cells, cells that play a critical role in allergic responses and inflammation. These disorders can vary widely in their presentations, depending on the extent and areas of mast cell activation or accumulation.

Mast Cell Activation Syndrome (MCAS)

MCAS specifically involves episodic or chronic inappropriate activation of mast cells in multiple systems, often without the typical signs of allergic reactions. It's a condition that can be difficult to diagnose due to the variability and commonality of symptoms with other disorders. Key signs and symptoms include:

1. Skin Manifestations: Hives, flushing, or itchy skin. These are common and often one of the first noticeable symptoms.

2. Gastrointestinal Issues: Diarrhea, nausea, vomiting, abdominal pain, and bloating. Symptoms can range from mild to debilitating and are often mistaken for other gastrointestinal disorders.

3. Anaphylaxis: Episodes of severe, life-threatening allergic reactions that can include a drop in blood pressure, severe asthma, and shock.

4. Cardiovascular Symptoms: Fluctuations in blood pressure (both high and low), palpitations, and lightheadedness, particularly related to changes in position.

5. Neurological Symptoms: Headaches, migraines, dizziness, and neuropsychiatric complaints such as irritability, attention difficulties, and memory problems.

6. Respiratory Problems: Wheezing, shortness of breath, and coughing that may mimic asthma but does not typically respond well to standard asthma treatments.

7. Bone and Muscle Symptoms: Bone pain, muscle pains, or cramps which may not be linked directly to physical activity or injury.

8. Fatigue: Chronic and often debilitating fatigue that does not significantly improve with rest.

9. Temperature Dysregulation: Feeling excessively warm or cold, which may not correlate with actual body temperature changes.

10. Flushing: Sudden redness of the skin, particularly on the neck and face, often triggered by stress, temperature changes, or specific foods or chemicals.

Distinguishing MCAS

MCAS is particularly challenging to diagnose because its symptoms overlap with many other conditions, and there is no single test that definitively confirms the diagnosis. The condition is identified through a combination of symptom assessment, response to treatment, and sometimes, measurement of mast cell mediators (chemicals released by mast cells) during symptomatic periods.

Management and Treatment of MCAS
Managing mast cell disorders, particularly MCAS, involves avoiding known triggers, which can vary widely among individuals, and may include certain foods, temperature changes, physical or emotional stress, and medications. Treatment usually includes medications to stabilize mast cells, antihistamines, and sometimes medications aimed at blocking other inflammatory signals.

For accurate diagnosis and effective management, it's essential for individuals experiencing these symptoms to consult healthcare providers who are familiar with mast cell disorders. Specialists such as allergists, immunologists, or hematologists may be involved in the patient's care.


Stop searching!

Get information sent directly to your inbox!

Get involved in the movement to help find answers faster through community sharing. #Sharingiscaring

    The information provided by EDS S.H.A.R.E. and EDS Joint Effort is not medical advice. It is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding any medical condition. EDS Joint Effort, its producers, and its contents are not liable for any actions taken based on the information provided, and all users agree to hold harmless EDS Joint Effort and all products, producers from any claims arising from the use of the information provided. This information is not designed to replace a physician’s independent judgment about the appropriateness or risks for a given patient. Always consult your doctor about your medical conditions. EDS S.H.A.R.E. does not provide medical advice, diagnosis or treatment. Use of the site is conditional upon your acceptance of our Terms of Use and Privacy Policy as stated.