Living with Type 1 Gaucher Disease

Adrianna was born with type 1 Gaucher Disease, a genetic condition in which an enzyme is missing from the body. This leads to a build up of fatty cells that can cause damage throughout the body. For Adrianna, this has led to intense bone pain, low platelet count, anemia, extreme Read more…

Living with Stickler Syndrome, RLS, Blindness and More

Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second Read more…

Level 10 Pain, the Mayo Clinic, Aphasia and Sarcoidosis: Claudia’s Journey So Far

Claudia Alick is an activist and influencer with a transmedia social justice practice, creating spaces for entertainment, education and empowerment by and for marginalized communities. While working as a disability advocate in 2009, Claudia found themself suddenly experiencing what they describe as mysterious level 10 pain, accompanied by mobility issues Read more…

Living with Hyperhidrosis, the Excessive Sweating Disease

Kristen lives with a rarely talked about disease called hyperhidrosis, which causes excessive sweating from the moment she wakes up to the moment she goes to bed. This includes the usual spots people sweat such as under arms or the low back, but also places you wouldn’t expect such as Read more…

Fiction Writer Emma G. Rose Incorporates Chronic Illness Experience in New Novel

In her new novel On the Bank of Oblivion, author Emma G. Rose explores her own history with chronic illness through the lens of contemporary fantasy. At 16 Emma was diagnosed with chronic fatigue syndrome (CFS), now referred to as myalgic encephalomyelitis (ME). It all started with a tickle in Read more…

Back to Back Post Viral Illnesses from Epstein Barr Reactivation and COVID-19

In September of 2020 Jennifer came down with a serious illness. Naturally she assumed she had COVID, but repeated tests kept coming back negative. Her illness lasted an entire month, and she didn’t return to full health afterwards. She continued to have extreme fatigue, body aches, sore throat and headache. Read more…

Recovering from Chronic Fatigue/Myalgic Encephalomyelitis with the Post Viral Podcast

Lindsay and Stu met in an online recovery program for myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS). This is a debilitating disease that encompasses a wide range of symptoms including brain fog, headaches, post exertion malaise, and bone weary exhaustion. While many people (including doctors) often Read more…

Complex Regional Pain Disorder: My Pain is like a Petulant Child

Pris is a 4th generation circus performer and entertainer who has worked in costume design and staged weapon play. She grew up as a very physical child, filling her days with dancing, baseball, basketball and more. She was familiar with the feeling of a normal bone break, and the subsequent Read more…

After Complete Renal Failure, this Former Megachurch Pastor Found Clarity During Dialysis

At 29 years old, Zac’s lifelong mysterious illness would finally come in to focus. He had always believed something was wrong in his body, but his religious family insisted he pray away his ailments without allowing for traditional doctor visits. He grew up to become a youth pastor in a Read more…

Approaching the Two Year Mark Living with Long Covid

Grace first contracted COVID-19 in October of 2020, having a fairly serious infection that almost required hospitalization. She caught COVID again just a month later, likely from a visit to the hospital. These back to back infections seemed to trigger an avalanche of health issues. Throughout 2021 she would be Read more…