Entries by Deanna Brownlee

Online Support Groups: An Untapped Resource

Living with a chronic or undiagnosed disease is a grueling, endless battle that leaves you clinging to the remnants of your sanity. The symptoms are incapacitating, the financial strain is crippling, and the emotional toll it takes is a beast unlike any other. The emotional destruction is almost a rite of passage for the chronically […]

Gene Editing: A Cutting-Edge Cure

As any patient will tell you, having a rare or undiagnosed illness is immensely difficult. Doctors don’t know how to help you, and there are very few resources available. It can be crushing. As you feel yourself fall apart every day, fighting for a diagnosis can become extremely discouraging.

Undiagnosed and Uninsured: Escaping Futility

Living with an undiagnosed disease is a heartbreaking battle that pushes you to the brink of madness. It drags on for years or even decades, eroding your life from within. When an unidentified illness invades your body, it also disrupts your life. No one believes you, no one can help you, and you have nowhere […]

Diagnosis Spotlight: Vascular Ehlers-Danlos Syndrome

Diagnosis Spotlight: Vascular Ehlers-Danlos Syndrome February of 1996 was the beginning of the end for David Bowen and his family. When the 13-year-old began experiencing abdominal pain and vomiting, his mother Cathy drove him to the hospital. There, doctors diagnosed him with a perforation of the sigmoid colon with peritonitis. The surgeon performed a colostomy […]

Diagnosis Spotlight: Lipedema

Diagnosis Spotlight: Lipedema Imagine living with a disease that no one understands. Instructors do not teach it in medical school, and less than three percent of physicians are aware of it. It mimics obesity in the arms and legs, but creates pain, fatigue, easy bruising, swelling, and inflammation. It only gets worse over time, leading […]

Discussing Your Undiagnosed Illness: How Your Loved Ones Can be Loving, Helpful, and Supportive

Living with an undiagnosed disease is immensely difficult. It is an endless journey of hopelessness, confusion, questioning, abandonment, and destitution. It is physically, emotionally, and financially draining. In a living death that drags on for years, all you can do is watch your life spiral out of control. Your body is failing you, and your […]