Hi there! 👋🏻
I’m Amanda. On the outside, I’m your average 26-year-old girl living her best life in Dallas, Texas. I have a great job, wonderful friends, a golden retriever, and a loving partner. But I also happen to have an invisible and life-changing chronic illness. When I was 14, I was diagnosed with a neuromuscular orphan disease called Limb Girdle Muscular Dystrophy 2L. TLDR: My proximal muscles (hips, knees, quads, shoulders, etc.) are atrophying away and there is no cure.
Navigating a rare chronic illness without a cure is like driving at full speed— eyes closed. You're not sure where you're going, why it's happening, when you'll hit a wall, and what life will be like afterward. It's a chaotic balancing act that messes with the mind as much as the body. It’s long phone calls with Mom and tear-stained pillows. It’s imposter syndrome and unsolicited advice. It’s working up the courage to share your condition and then getting dumped. It’s tricky medical bills. It’s learning to say no. It’s advocating for yourself.
And it’s not being talked about enough.
So, I decided to start Her Chronic Wellness — a cozy little corner of the web that holds space for those on chronic journeys of their own. And hey, if you’re just here to learn, there’s a seat at the table for you too. Either way, I’m thrilled you’re here.
Be well,
Amanda 🖤