Search

...If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or lost in one way or another? I often...

...When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have, and still do. Perhaps it's not necessary, but...

...The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How long do you want to live?" She explained...

...I recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of shame and anger within me. I asked myself...

...When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a trilogy of articles. Or physical therapy. But what...

...I once told someone about their healthcare, "You have to be the squeaky wheel." Later, I was corrected by a provider with the disclaimer that being a squeaky wheel can...

...Living with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my experience, the social aspects of living with a...

...When you become a parent, people say you will have a village that will be there for you every step of the way. And you believe them. Yet, for some...

...Prior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical stories, such as the notorious Tuskegee experiment, had...

...Advocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated comments. Sometimes, a deep fatigue sets in, and...