The resources you should have been handed on day one.
Six handbooks · Free · No sign-upFree, downloadable handbooks for syringomyelia and its associated conditions, written in plain language and built around what patients actually need to know.
These are the resources you should have been provided on the day of diagnosis. Read them, print them, and bring them to your next appointment.
Written for patients. In plain language.
Every handbook ends with how to build your care team, and every claim points to a source.
Each handbook follows the same path: what the condition is, how to recognize it, how it gets diagnosed, and what holistic management looks like day to day. The condition handbooks run 11 to 12 pages. The syringomyelia guide is the full 29-page edition and includes our Hierarchy of Needs framework.
They are not medical advice, and they say so on every page. They are meant to make you a better-informed partner in your own care, so you walk into appointments with the right questions instead of leaving with more of them.
Download
Every PDF opens in your browser. Save it to your phone so it is there when you need it.
Read the parts that fit
You do not need all of it at once. Start with symptoms and diagnosis, then come back for management.
Bring it with you
Print it or pull it up at your appointment. Pair it with our appointment prep guides.
Syringomyelia: living well with a syrinx.
Our flagship handbook. Diagnosis, symptoms, treatment, the cluster connection with Chiari, EDS, and POTS, and the full Hierarchy of Needs, in one place.
Diagnosis · Symptoms · Treatment · The Hierarchy of Needs
Syringomyelia is one of the most misunderstood, misdiagnosed, and underserved conditions in medicine. This guide exists to bridge the gap between where research is and where you are right now: living with a syrinx, managing symptoms, and trying to make sense of it all.
Part I · Understanding
- What is a syrinx?
- Causes and types
- Recognizing symptoms
- Getting diagnosed
- Chiari, EDS, POTS and the cluster connection
- Treatment options
Part II · Hierarchy of Needs
- How to use the framework
- Tier 1: sleep, hydration, protein, stress
- Tier 2: community, exercise, sunlight
- Tier 3: your medical team and whole food nutrition
- Tier 4: equipment and supplements
- Your personal action plan
Part III · Living with a syrinx
- Neuropathic itch, the overlooked symptom
- Mental health and the invisible burden
- Navigating the healthcare system
- Resources and sources
Five more handbooks. Same plain language.
Syringomyelia rarely travels alone. These handbooks cover the conditions most often found alongside it, each one ending with how to build your care team and a full source list.
Chiari Malformation
When brain tissue extends into the spinal canal and disrupts cerebrospinal fluid flow, often the root cause of a syrinx.
11 pages · PDF- The four types of Chiari
- Recognizing symptoms and getting diagnosed
- Chiari and syringomyelia
- Conservative management and surgical considerations
- Holistic daily management
Ehlers-Danlos Syndrome (EDS)
A group of heritable connective tissue disorders affecting collagen, and with it skin, joints, blood vessels, and organs.
12 pages · PDF- The 13 subtypes
- Recognizing symptoms and getting diagnosed
- Holistic symptom management
- Movement, exercise, nutrition, and supplements
- Mental and emotional wellbeing
Postural Orthostatic Tachycardia Syndrome (POTS)
A form of dysautonomia where heart rate climbs abnormally on standing. Underdiagnosed, measurable, and manageable.
11 pages · PDF- Types of POTS
- Recognizing symptoms and getting diagnosed
- The POTS, EDS, and MCAS connection
- Exercise as the cornerstone treatment
- Diet, hydration, and electrolytes
Dysautonomia
The umbrella term for autonomic nervous system dysfunction: heart rate, blood pressure, digestion, temperature, and more.
12 pages · PDF- The autonomic nervous system, explained
- Types of dysautonomia
- The connective tissue connection
- Holistic management: the five pillars
- Nervous system regulation techniques
Mast Cell Activation Syndrome (MCAS)
When immune cells found in nearly every tissue become chronically hyperreactive, triggering unpredictable multi-system symptoms.
11 pages · PDF- The mast cell, explained
- Recognizing symptoms and getting diagnosed
- Identifying your triggers
- Holistic management, diet, and nutrition
- Supplements and emerging therapies
Tell us what handbook you needed and never got.
These handbooks exist because patients asked. If there is a condition, symptom, or situation you wish someone had explained to you on day one, email us. We read every message and we build from them.
A handbook is a start, not the finish.
Knowledge. Then action.
Once you understand your condition, the next step is turning that into better care. Our appointment prep guides give you the questions to ask ten different specialists, the medical glossary decodes the words on your reports, and the Hierarchy of Needs shows where to put your energy first.
If you are newly diagnosed and overwhelmed, you do not have to sort this out alone. Email Info@IAMHEARDCoalition.org and a real person will point you to the right place to start.
Clinicians, chapter leaders, support groups.
Want these handbooks in your waiting room, clinic, or meeting? Share the links freely, or email us about printed copies. Getting these into patients’ hands on day one is the whole point.
Disclaimer
These handbooks are educational resources produced by the I AM HEARD Coalition. They are not medical advice, diagnosis, or treatment, and they do not replace the judgment of your physician or care team. Each handbook cites its own sources; please review them and discuss anything you read here with your provider before making changes to your care.
Sharing
You are welcome to share links to these handbooks and to print them for personal, clinical, or support-group use. Please do not alter the content or remove the Coalition’s name and sources.
Handbooks on this page
- I AM HEARD Coalition. Syringomyelia: Living Well with a Syrinx. The Complete Patient Guide, 2026 edition (29 pages). Open PDF
- I AM HEARD Coalition. Chiari Malformation patient handbook (11 pages). Open PDF
- I AM HEARD Coalition. Ehlers-Danlos Syndrome (EDS) patient handbook (12 pages). Open PDF
- I AM HEARD Coalition. Postural Orthostatic Tachycardia Syndrome (POTS) patient handbook (11 pages). Open PDF
- I AM HEARD Coalition. Dysautonomia patient handbook (12 pages). Open PDF
- I AM HEARD Coalition. Mast Cell Activation Syndrome (MCAS) patient handbook (11 pages). Open PDF