Life with EDS and Dystonia: Understanding Dystonic Storms with Aphasic Events
Written by: Amanda Henderson 1-28-26 Note: I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice. Living with dystonia presents daily challenges that many people may not fully understand. This neurological movement disorder causes involuntary muscle contractions, leading to twisting and repetitive movements or abnormal postures. It can be caused by genetic or neurological factors, brain
Navigating the Complexities of Ehlers-Danlos Syndrome and the Added Fear of Dystonic Storms (or any new and terrifying symptom)
Written by: Amanda Henderson 1-9-26 Note: I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice. Living with multiple chronic conditions can feel like walking a tightrope without a safety net. My journey with Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and Dysautonomia (also known as the EDS trifecta) has taken me through a maze of symptoms and challenges. Along
A story beneath the cover- My journey with hEDS and the inflammation connection.
Written by: Amanda Henderson 2-28-25 Note: I'm not a medical professional- this blog is intended to provide experience and information in...
A new piece of the puzzle revealed: the Venous System
I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical...
Putting the Pieces Together : A mysterious medical journey leads to new discoveries of lymphatic complications.
Chronic illness has left my life scattered and in pieces for a long time. I've found some unconventional ways to put it back together...
The Mysteries of the Lymphatic System (and how solving them could help more chronic disorders)
Written By: Amanda Henderson, October 18, 2023 Diagram of the latest lymphatic system map I'm not a medical professional- this blog is...
EDS, Hollow Organs and Hydration Concerns
EDS is a lack of/ damaged collagen, the glue that holds so much of the body together. For many who have EDS, it makes hollow organs
Insurance, in-schmur-ance... me my mo-shur-ance..
Written by: Amanda Henderson 08-04-2023 Banana Fanna Fo-shur-ance... I really need my saline IVs... My brain is fogging and resorting to...
"Like a bird on the wire... I have tried in my way to be free."
-Lyrics by Leonard Cohen *photo of a Zebra Finch on barbed wire written by: Amanda...
Be Like Sadie Poo
Disability can feel alone. Remember the forgotten millions.
