Partnership In Health, The Turn Around

I was on life support three times.

This was the worst flare I have experienced since my diagnosis five years ago; it became an undeniable wake-up call—one that forced me to pause and truly reassess how I am living with my condition.

My diagnosis

I live with Andersen–Tawil syndrome with hypokalemic periodic paralysis—a rare genetic condition that affects muscle function and can lead to episodes of weakness and paralysis. As with many people living with all forms of periodic paralysis, symptoms can fluctuate, progress quietly, and escalate very quickly if early warning signs are missed.

Choosing what I can control

I cannot control having a rare disease, but I can control how I respond to it. Since this flare, I have started making purposeful decisions about my health—how I eat, how I manage stress, and how I move my body.

I’m also intentional with how I spend my time. My hobbies, time with my dog, and moments with my family are no longer secondary. They are part of how I protect my energy and support my overall stability. Everything is with intent now.

Partnering with my healthcare team

Taking an active role with my healthcare team puts me back in the driver’s seat. It gives me the tools to optimize my good days and better recognize early weakness before it progresses toward paralysis.

This approach isn’t about controlling my disease. It’s about awareness, partnership, and learning how to respond sooner rather than later.

Moving forward with intention

Living with a rare disease requires constant adaptation. This experience reminded me that intention matters, daily choices matter, and that informed, collaborative care can change how we navigate even the most unpredictable conditions.