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...
by RachelLee | Feb 17, 2023 | General, 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...
by RachelLee | Jul 20, 2022 | Patients
Let’s start off the week with a recap on Low Histamine Diet and Mast Cell Dysfunctions and/or Syndromes. What is it? What are THEY? Why do we need it? And, How does it Help? Histamine is one of the mast cells in your body, a piece of your immune system. Your...
by RachelLee | Nov 19, 2021 | General, Patients, Physicians
by Rachel Lee Davis, with Dr. Peter Bream, Jr., MD FSIR The Fight for Water Water is fundamental to human life. We are taught this in schools and in our homes, we experience this when we are thirsty. Some understand this because of their geography and access to wells...
by RachelLee | Nov 11, 2021 | General
It’s finally here! This blog I mean. With EDS, you have to count the simple things. Fall is here, and with it come the inevitable slew of…..FOLLOW UPS. More doctors appointments that you ever think might happen in two months, and you always imagine it...
by RachelLee | Oct 6, 2021 | Patients, Physicians
Posted September 30, 2021 A statement from The Ehlers-Danlos Society and the EDS and HSD International Consortium Pain Working Group. Pain is common among persons living with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) and is a major...
