Highlighting patients and care partners from around the world living positive lives despite the hurdles they face.
These are their stories, in their own words.
By José Picayo I am 64 years old, a photographer and a weaver. Like many men, I did not know much about the prostate until I was diagnosed with prostate cancer in 2022. Not knowing or understanding prostate cancer, when one hears the words “you have cancer,” one thinks of dying. Having had my father … Read more>>
By Laurice Levine As I reflect on my life with transfusion-dependent beta-thalassemia (thal), it is easy to become overwhelmed. In short, thalassemia is an inherited blood disorder where the body is unable to produce hemoglobin, which causes severe anemia and endless complications. In 1973, when I was diagnosed at 14 months of age, my parents … Read more>>
By Fi Clark Around December I developed tinnitus, or ringing in the ears, as a side effect to medication that I didn’t want and didn’t think I needed. At the time I was in denial – if I don’t give it attention then surely it will go away. So I waited…and waited…and whilst I waited, … Read more>>
By Anna Crabtree My son’s journey began December 8, 2015, when we heard the words, “Your son has Crohn’s disease.” Our world was shattered. We had three other healthy children and our then 7-year-old Cam was ulcerated from his mouth to his anus. We looked at the images of his endoscopy and colonoscopy and absolutely fell … Read more>>
By Jennifer Beilis I am hearing impaired and dealing with that and my other medical issues (perimenopause, polycystic ovary syndrome, thyroid disease, and arthritis) has triggered anxiety and depression. It was always difficult for me to know where a voice was coming from in the room. It was also hard to hear the person and … Read more>>
By Helen Ross In this blog post, 25-year-old guest blogger Helen Ross shares her story of struggling with anxiety, depression, and crippling panic attacks as a young adult attending college and playing competitive sports. According to the American Institute of Stress, anxiety and depression are the two most common reasons that college students seek mental … Read more>>
By Erin Carey I created FACES of Narcolepsy in 2017 when I joined forces with four other moms from across the U.S. to fill a need in the pediatric narcolepsy community, but FACES of Narcolepsy truly began when my sister was diagnosed with narcolepsy with cataplexy 10 years earlier. My sister’s diagnosis of this rare autoimmune … Read more>>
By Sheryl Brehm All of my childhood memories have to do with being the “fat kid.” It started at two years old when I learned the word “chubby.” I didn’t know what it meant, but I remember not liking the laughing that came with it. In summer camp, I remember waddling up to the stage … Read more>>
By Stephen Mellott I’m an adult with ADHD. I’ve been fortunate enough to have a rewarding career as a product manager for the last 32 years. I earned my bachelor’s degree in business and went back to school in 2012 and earned my MBA. I made a career move to a completely new industry four … Read more>>
By Ashlee Olsen In 2004, about six weeks after giving birth to my son, I developed my first symptom of neuromyelitis optica (NMO), a rare condition where the immune system damages the spinal cord and the optic nerves. One morning, I woke up and couldn’t see out of my right eye. I visited the local … Read more>>