Resources I've come across and find valuable, and I'm constantly adding more. Finding care, understanding your conditions, and participating in the research that will change the future. Complex chronic illnesses overlap, and so do these resources. Select a condition below to get started.
The Ehlers-Danlos Syndromes are a group of heritable connective tissue disorders affecting the structural proteins that hold your joints, skin, blood vessels, and organs together. Hypermobile EDS (hEDS) is the most common type and is far more prevalent than previously recognized. Hypermobility Spectrum Disorders (HSD) exist on the same continuum but don't necessarily meet full hEDS criteria. Both cause joint hypermobility, chronic pain, fatigue, and a wide range of systemic symptoms. The other types of EDS are rare diseases, each defined by distinct genetic markers and clinical presentations.
The autonomic nervous system controls heart rate, blood pressure, digestion, temperature, and more. Dysautonomia is a broad term for when that system doesn't work as it should. Postural Orthostatic Tachycardia Syndrome (POTS) is the most recognized form: an abnormal spike in heart rate upon standing that causes dizziness, fatigue, brain fog, and fainting. It is more common in women, frequently follows viral illness or physical trauma, and is often seen alongside hEDS, ME/CFS, MCAS, and Long COVID.
Mast cells are immune cells found in virtually every tissue in the body. In Mast Cell Activation Syndrome (MCAS), they release chemical mediators. histamine, prostaglandins, tryptase, and others. inappropriately and excessively, causing symptoms across multiple organ systems: flushing, hives, GI distress, anaphylaxis, fatigue, brain fog, and more. MCAS is frequently seen alongside hEDS and POTS. Despite this, MCAS remains poorly recognized by most clinicians, and finding a knowledgeable provider is one of the biggest challenges patients face.
ME/CFS is a serious, complex, multi-system disease. Its hallmark is post-exertional malaise (PEM): a worsening of symptoms after physical, cognitive, or emotional exertion. Other core features include unrefreshing sleep, cognitive dysfunction (brain fog), and autonomic symptoms. ME/CFS is not uncommon and has been chronically underfunded relative to its disease burden. Due to the significant overlap between ME/CFS and Long COVID, some resources below address both conditions.
Resources for other conditions in the complex chronic illness space. including endometriosis, Sjögren's syndrome, neuroinflammation, and multi-condition organizations that span several of the conditions covered on this site. Looking for something specific? Let me know.