experts by experience

In 2001, at the age of three, my primary focus in life was watching Powerpuff Girls–and keeping my one-year old brother from drooling on my collection of stuffed animals. Not surprisingly, I didn’t notice when my dad started acting strange. Even my mom was unconcerned at first–his personality changes seemed trivial enough.

Usually an [...]

By Taylor Kane • November 18, 2019

January 2014–After three years of being treated for pneumonia, at age 35, with five children and an insignificant medical history, I learned that I had a weird-named disease–scleroderma, which had no cure. I also learned that I would need a double lung transplant. 

Fast-forward to September 2016–I was admitted to a university hospital in [...]

By Lia Young RN • November 1, 2019

What if I told you the hardest thing about living with a genetic bleeding disorder, like hemophilia, isn’t the joint damage, the surgeries or any of the other physical hurdles? What if I told you, what “hurts” the most is going through a lifetime worth of struggles, disappointments, obstacles, and being told no! The [...]

By Justin McClanahan • October 4, 2019
Ever since I was a young girl I knew I wanted to be an Early Childhood Special Education teacher. My self-identity was being a teacher and my purpose was teaching. My life was going as planned—until it wasn’t. Joint pain and dislocations became more frequent, I worked fewer [...]
By Shani Weber • May 18, 2018
Reflecting on my health, one of the most challenging experiences I faced as a patient was losing my primary care provider. Physical and mental health are continuously challenged when you are diagnosed with a chronic disease. For me, being diagnosed with fibromuscular dysplasia (FMD) and Ehlers-Danlos Syndrome was complicated [...]
By Kari Ulrich, Volunteer Mentor • April 6, 2018
Living with a chronic illness often means confronting your denial. I lived for eight years with multiple sclerosis (MS), thinking that my brain was beyond having new lesions. This was because I was taking a powerful drug called Tysabri. All my MRIs showed no new lesions.  However, my disease did [...]
By Gil Greenman • March 2, 2018
With age, most of us realize the value of a solid night’s sleep, good nutrition, and exercise. We come to understand that this self-care greatly impacts how we feel, function, and perceive events around us. This is exponentially true for family caregivers of a person facing a terminal illness. [...]
By Renata Louwers • February 2, 2018