Educational Handouts
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Thank you for helping us continue this work. Below you’ll find the available handouts, ready to download.
General Downloads for Chronic Conditions
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Graceful Advocacy
This guide teaches patients with chronic illnesses how to advocate for themselves in healthcare settings with confidence, preparation, and respect. It emphasizes strategies for building stronger provider relationships, reducing medical gaslighting, and fostering systemic change through collaborative, solution-oriented dialogue.
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Medical Summary Worksheet (Fillable PDF)
This customizable form helps patients organize their medical history, conditions, medications, allergies, surgeries, and provider contacts in one place. Designed for easy updating and sharing, it supports better communication with healthcare providers and smoother coordination of care.
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Navigating Health Insurance
This booklet helps patients with chronic illnesses understand health insurance terms, compare plan types, and choose coverage that fits their medical and financial needs. It also offers practical tips for maximizing benefits, managing costs, and accessing additional support programs.
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Understanding Workplace Accomodations
This guide explains employee rights under the ADA and ADAAA, how to request and negotiate reasonable accommodations, and strategies for addressing common workplace barriers for people with chronic conditions. It includes examples tailored for EDS and POTS, empowering individuals to advocate effectively for inclusion and support at work.
One-Page Comorbidity Medical Summaries
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Ehlers-Danlos Syndrome (EDS) at a glance
EDS is a group of hereditary connective tissue disorders that weaken skin, joints, blood vessels, and organs, often causing hypermobility, fragile skin, chronic pain, and vascular risks. There are 13 recognized subtypes, each with unique genetic features, diagnosed through clinical evaluation and genetic testing.
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Postural Orthostatic Tachycardia Syndrome (POTS)
POTS is a dysfunction of the autonomic nervous system marked by a sharp rise in heart rate upon standing, along with fatigue, dizziness, and circulation issues. Diagnosis is often through a Tilt Table Test, and treatment includes hydration, salt intake, compression garments, exercise, and sometimes medication.
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Craniocervical Instability (CCI)
CCI occurs when weakened or lax ligaments in the upper neck cause instability between the skull and spine, which can compress the brainstem and spinal cord. It is linked to EDS and may cause severe neurological and autonomic symptoms; diagnosis involves specialized imaging, and treatment ranges from conservative therapies to surgical fusion.
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Mast Cell Activation Syndrome (MCAS)
MCAS is a condition where mast cells overreact and release chemicals too frequently, leading to allergy-like symptoms such as flushing, hives, anaphylaxis, and abdominal issues. Treatment focuses on antihistamines, aspirin, and prescription medications to control symptoms.
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Gastroparesis
Gastroparesis, or delayed stomach emptying, occurs when stomach muscles don’t move food properly, often due to vagus nerve dysfunction. It can cause nausea, vomiting, malnutrition, and blood sugar changes, with treatment focused on dietary adjustments, medications, or in severe cases, tube feeding or IV nutrition.
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Thoracic Outlet Syndrome (TOS)
TOS is caused by compression of nerves or blood vessels between the collarbone and first rib, leading to pain, numbness, or circulation problems in the arms and hands. Treatment may involve physical therapy, medications, or surgical decompression in severe cases.
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Median Arcuate Ligament Syndrome (MALS)
MALS occurs when the median arcuate ligament compresses the celiac artery and nearby nerves, reducing blood flow and causing abdominal pain after eating. Diagnosis relies on imaging, and treatment usually involves surgery to relieve the compression.
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Complex Regional Pain Syndrome (CRPS)
CRPS is a chronic pain condition, often after injury or surgery, where pain is disproportionate to the original cause due to nervous system dysfunction. It can cause swelling, temperature changes, and severe burning pain, with treatment involving therapy, medications, nerve blocks, and psychological support.
Resources for Providers
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Wound Closure Technique For Patients With Connective Tissue Disorders
This guide by Dr. Matthew Oseto outlines wound closure techniques tailored for patients with connective tissue disorders like Ehlers-Danlos Syndrome. It highlights safer suture and adhesive choices, cautions against materials that may cause long-term reactions, and emphasizes gentle tissue handling. Step-by-step recommendations for different wound types help ensure better healing and reduced complications.