Being Crushed by a Tree Changed Steve Lovelace’s Life Forever

In 1982 Steve Lovelace was pinned by a felled tree that barber chaired, meaning it split lengthwise while being cut down. His injuries were severe – his face and several vertebrae were crushed. Steve found himself instantly paralyzed and stuck under this tree, where he would remain for hours while Read more…

Announcing the Undiagnosed Disease Fund!

Andi and Jesse are married! For their wedding registry they asked their community to donate to an Undiagnosed Disease Fund, with the goal of raising enough money to provide genetic testing for an individual in need. Full genome sequencing can be helpful for individuals with a mystery illness, either to Read more…

Introducing Guava: A Personalized Chronic Illness Management App

Living with a chronic health condition is difficult enough, but managing health records, medications and symptom tracking can feel impossible. That’s what the folks at Guava are trying to fix. They have created a free centralized holistic health management tool that integrates with over 50,000 health organizations across the US Read more…

Defying the Odds: Danielle’s Journey with Cerebral Palsy

Danielle was born a micro preemie at just 25 weeks, weighing only 1 pound 8 ounces. Diagnosed with cerebral palsy, doctors gave her a .5% chance of living a meaningful life. Alongside cerebral palsy, she also lives with POTS and scoliosis, but this has not stopped her from owning a Read more…

Jen From My Spoonie Sisters On How RA Led to Medically Induced Pustular Psoriasis

Jennifer Weaver is the host of the My Spoonie Sisters podcast, and her history with chronic illness is a storied tale. While most people never have to worry about the 1% chance of side effects from medication, Jen is the person who will develop the rare reaction. That’s exactly how Read more…

Fighting Back Against CFS/ME With Dr. Hoppers

Dr. Melanie Hoppers never planned to become an expert on chronic fatigue syndrome (CFS). She learned about it briefly in medical school, but her professors largely brushed off the complaints of CFS patients. It wasn’t until her own daughter got sick that Dr. Hoppers began to research CFS, becoming desperate Read more…

From Lupus to Fibromyalgia: Kindra’s Evolving Diagnosis

For Kindra, it’s been a 17 year journey to figure out why she is chronically ill. Her symptoms started around 14 years old, and include not just widespread chronic pain, but also severe fatigue and brain fog. Although the pain is difficult, the fatigue has the most detrimental effect on Read more…

Are Scoliosis, Kyphosis and EDS Connected? Billie’s Twisty Tale

In 5th grade Billie’s classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person’s spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was Read more…

Psoriatic Disease, Small Fiber Neuropathy and More: Angela’s Diagnostic Odyssey

When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a Read more…

Classical EDS, MCAS, POTS, Fibro and More: Maureen’s Complex Journey

Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges. Read more…