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6 days ago
Ketamine Infusion Therapy: A Breakthrough for Chronic Pain Management
For individuals living with chronic pain, finding effective relief can feel like navigating an endless maze of treatments with little...
Jan 12
Breaking the Mold: How Conformity Impacts Life with a Rare Disease
Living with a rare disease is a unique journey, often marked by physical, emotional, and social challenges. For many of us, the pressure...
Dec 30, 2024
Avoiding the Doctor: Living with EDS and the Fear of Judgment
Avoiding the Doctor: Living with EDS and the Fear of Judgment For four weeks, I dealt with relentless nosebleeds—bad ones every other...
Dec 26, 2024
Aerial Yoga: A Potential Ally for Ehlers-Danlos Syndrome (EDS) Management
Living with Ehlers-Danlos Syndrome (EDS) often means navigating the challenges of joint hypermobility, chronic pain, and fatigue....
Dec 25, 2024
Merry Christmas
The ZebraMedic’s Holiday Adventure ‘Twas the night before Christmas, and all through the savanna, not a creature was stirring—except for...
Dec 22, 2024
Effects on Motor Control and Balance in Ehlers-Danlos Syndrome and Substance Influence: Systematic Review
Introduction Proprioception, the body's ability to sense its position and movement in space, is a fundamental component of human motor...
Nov 27, 2024
The Psychosocial Impact of Living with Ehlers-Danlos Syndrome
Emotional and Psychological Challenges Living with EDS can lead to feelings of frustration, isolation, and anxiety. The chronic pain and...
Nov 23, 2024
Invisible Illness: The Stigma of Suffering in Silence
When you live with an invisible or rare disease, your struggles often go unseen and misunderstood. The world operates on what it can see...
Oct 30, 2024
Breaking Barriers: Why I’m Fighting for a Career Beyond EMS
I’m at a point in my life where I am actively looking for a role that matches my skills, education, and certifications—but the struggle...
Feb 24, 2024
The travels to find care….
Thought I share another aspect about living with a rare disorder! We often travel for care! Yesterday I had to travel 2.5 hours one way...
Feb 22, 2024
The MCAS diet journey!
Refining my approach to managing MCAS has become a deeply personal journey. Following consultations with medical professionals,...
Jan 22, 2024
The Move, The Beach and The Keto!
Hey everyone, it's been a while since I last shared an update. I recently made a move from Missouri to South Carolina, securing a...
Jan 16, 2024
Life is too short, move to the beach and never look back!
I will be relocating to South Carolina! The climate is much better there! Also, my dog agrees, he has less arthritis problems!!! Keeping...
Dec 28, 2023
livewello - know your DNA
Years ago I discovered livewello and I love it. Livewello is a web-based platform that provides tools for analyzing and interpreting...
Oct 23, 2023
Hidden Disabilities: The Body's Adaptive Mechanisms and the Experience of Public Scrutiny!
Did you know that while some disabilities are evident to onlookers, others remain concealed and are often described by those in the know...
Oct 19, 2023
Bend or Break | EDS Documentary (AWARD-WINNING)
Bend or Break is an award-winning documentary based on the memoir of Mitch Martow. The story begins with a 14-year-old boy's struggle...
Oct 19, 2023
When EDS and its friends throw a party! - Our body is connected, so why not our medical specialties?
The last 8 weeks, I feel like I’ve been through hell and back. Of course, I always feel like that when I have a terrible flare-up. But I...
Sep 27, 2023
The isolating and defeating feeling of Ehlers-Danlos Syndrome!
Today, I'm feeling defeated. About four weeks ago, I made the switch to full-time day campus studies, thanks to vocational rehabilitation...
Sep 19, 2023
Dysautonomia
The shift in seasons and alterations to my daily routine have led to a Dysautonomia flare-up, which is far from enjoyable. Let’s delve...
Sep 13, 2023
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