by RachelLee | Jan 10, 2025 | General
It has been over three years since we started this work, and the impact has been more than I could have dreamed of. We’ve grown so much! And learned even more. We want to keep growing and learning. I’ve decided to take the best of both RLPAC and Umi combine them into...
by RachelLee | May 22, 2024 | Ehlers-Danlos Syndrome, General, Patients
“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...
by RachelLee | Dec 5, 2023 | Ehlers-Danlos Syndrome, Fibromyalgia, General, Mental Health, Patients, Physicians
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!...
by RachelLee | Jul 19, 2023 | Ehlers-Danlos Syndrome, General, Patients
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...
by RachelLee | Apr 2, 2023 | Autism, General, Mental Health
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...
