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…

Chronic Illness Author and Advocate Ilana Jacqueline Shares Her Rare Disease Journey

As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. Read more…

Living with Functional Neurological Disorder (FND)

Nolan had been living with unexplained exhaustion for years before their health flare-up kicked into high gear. Suddenly they were experiencing seizures, weakness, gait issues and vocal/motor ticks. When seeking answers from doctors they were often brushed off, having the reality of their symptoms denied when answers were not immediately Read more…

Late Stage Lyme Disease: Diagnosed 20 Years Later

At 11 years old, it was common for Emily to play in the grassy field of the buffalo farm where she grew up. One day she was bitten by a tick, developing a bullseye rash around the bite. Within weeks she developed a severe fever and hallucinations, but unfortunately the Read more…

Living with Keratoconus, a Rare Eye Disease

Imagine performing without being able to see the edges of the stage, or worrying that your eyes could rupture before the show’s end. What sounds like a horrible nightmare was a reality for Sarah, a Seattle based actor living with keratoconus. This rare eye disease causes a bulging and thinning Read more…