Rachel Lee Patient Advocacy Consulting, LLC
Trust – Courage – Hope
Specializing in Ehlers-Danlos Syndromes, Autism and Chronic Illness
“Hope is being able to see that there is light despite all of the darkness.”
-Desmond Tutu
RLPAC Latest Blog Posts
What Mistakes Do Patients Make?
"What mistakes as patients could we be making that we should be aware of?" I was recently asked this vital question. It is a brave one, a query most patients are constantly plagued by in their own thoughts but simultaneously reticent to consider. That is to be...
Monkey Say, Monkey Do: Doctor Speak
In my work, I often hear frustration from physicians about how patients communicate. And I can sympathize, of course! When we're trying to solve a complex problem for someone it is difficult to get the information you need in the short time typically allowed! And if...
Ehlers-Danlos/HSD’s and Vocal Cord Dysfunction
Let's talk ENT's, Vocal Therapists and Vocal dysfunction in EDS! My story: Severe chord bowing, hypertension in interior and exterior muscles, dystonia complicating all of the above, TMJ, resulting dysphagia - swallowing issues. Most EDSers develop at least one of...
Grief as a Tool for Sensory Resilience
Over a decade ago now, I lost two children. My babes were only a couple months old but as research has well established, our minds and bodies crave connection with loved ones regardless of how old they are or visually present, and I have deeply loved all 5 of my...
SSRI’s Cause Thickening of Collagen in Mitral Valve: A Risk to Ehlers-Danlos Patients
SSRI's shown to cause thickening of collagen in the mitral valve, exacerbating underlying valve dysfunctions. While mitral valve prolapse is rarely shown to require surgery when found in the hEDS population, research in the last few years has shown that it is a...