How to Use Your Symptoms Tracker

Chiari Malformation rarely travels alone. This is particularly true for those with hypermobile Ehlers-Danlos Syndrome (hEDS), who often experience what we have termed “The Plethora Effect of hEDS”—where multiple pathological cofactors overlap and contribute to an acquired Chiari Malformation. Because our health pictures are complex, this checklist covers a broad range of systemic symptoms, including many that healthcare providers may have dismissed in the past.

Take a deep breath and go at your own pace. Seeing everything listed on paper can feel emotional, but identifying these overlapping patterns is a powerful step toward getting answers and advocating for your care. This list is a tool to help you get your voice back as you learn to advocate for yourself again!

1. Print the PDF. Having a physical copy makes it easier to track changes over time and share directly with your doctors.
2. Mark your history (Dot): Read through the list and place a dot (•) next to every symptom you have EVER experienced.
3. Mark your present (Check): Go through the list a second time and place a check mark (✓) next to the symptoms you are CURRENTLY experiencing.
4. Identify your priority top 10 (Highlight): Review your current symptoms and highlight the 10 that most affect your daily quality of life.

You don’t have to tackle the whole list today; just start with what matters most right now.

Your Next Step: Start your medical discussions with those 10 highlighted symptoms. Focus on what would bring you the most relief and help you get your life back.

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