A Professional Patient

The image shows a person sitting in a hospital bed, working on a laptop. The view is from their perspective, focusing on their hands typing on the keyboard. The laptop screen displays a document editor or a reading platform. The background reveals part of the hospital room, including medical equipment, a cup on a table, and a chair by the wall, contributing to a clean and professional environment.

A platform created by and for people living with disabilities and illnesses—whether chronic, acute, physical, mental, or neurodiverse. We are a community built on engagement, camaraderie, support, and celebration. Together, we address real-world challenges: navigating healthcare systems, overcoming accessibility barriers, tackling problematic policies, advocating for your needs, and so much more.

Latest Posts

cheerful young brunette lying on her sofa relaxed at home

Patient Spotlight: Knowledge is Power: My BRCA Story of Fear, Love, and Courage

I was always afraid to be tested for negative BRCA gene mutations. I knew they ran in my family. My grandmother, two aunts, and a cousin lost their lives to breast cancer. Then, my mom got sick, and everything changed. She fought hard for five years, and through it all, we were inseparable. There aren’t words to describe how much I miss her. Before she passed, she asked me to get the BRCA gene test. I promised her I would. But when the time came, I was terrified.

My name is Michael, and I have epilepsy.

My name is Michael, and I have epilepsy. That’s such a boring start. I considered if I should begin with a scene of me thrashing about as I have a convulsive seizure but decided to save that for some other time. Just diving right into it – weird. However, it is International Epilepsy Day, so with that important announcement, I’m making a less-important announcement. My name is Michael, and I have epilepsy.

I didn’t “always have” epilepsy. I did, but for years, there was so much disagreement between doctors, I gave up. As a kid, my parents thought I had absence seizures (previously known as petit mal seizures), but that is just me staring off into space for a few seconds, and I mean a few, literally. Two or three. I didn’t fall or become disoriented or confused when they ended. In fact, if I were speaking, I’d pick up the sentence I was saying where I left off, as though no time had passed.

We Did IT!

We did it! How many posts can be short, sweet, and so happy? Take it in. This blog launched early because of an emergency call to action (see archive). We’ve been waiting for news about this decision. We rallied with the parents, families, local community members, professionals, and our readers and subscribers to shut down a proposal Nebraska’s Health and Human Services was trying to slide in at the last minute that would impact children with autism and their families severely. They’d place higher restrictions (that no other state has) for professionals to get their licenses; they’d cut off support, resources, and financial aid for families with children who have severe autism because those qualifications would also skyrocket. They had only days of public comment on purpose.