My name is Aimee, I have been clinically and genetically diagnosed as having hypokalemic periodic paralysis.
My symptoms first started presenting at age 7. I grew up in wellington New Zealand and I recall waking up for school and having no function of my legs and limbs, I couldn’t walk unaided. My parents were confused and figured I didn’t want to go to school. I was taken to a local GP and hospital; no comprehensive tests or blood work were completed. The only explanation that they could provide was that my condition was psychological. I would regain feeling and movement after several hours which only solidified the doctors’ suspicions that there was nothing wrong with me.
Several years passed and I would try my best to conceal attacks which would often happen in the dead of night. I was still a child and the fear and anxiety I had of experiencing these attacks without support was terrifying. I felt shame and embarrassment as I knew that no one believed me, and my condition would often rare it’s ugly head when I least wanted it to such as on my brother’s birthday or other important dates.
When I was 11 years old, we flew to Los Angeles on a family holiday. The night before we were to travel on a bus tour to Hollywood where we had tickets to go to universal studios. I hoped I would not have any issues however upon waking I felt the dead weight of my legs buckle beneath me as I stood up. I felt sick to my stomach and prayed that the attack wouldn’t last long as I didn’t want to ruin the day. I struggled onto the bus and unfortunately as the day progressed, I spiraled deeper into an attack, I lost feeling in my arms, legs and I could no longer hold up my head I was completely paralyzed. When we reached the theme park, I was placed in a wheelchair, and we tried as best we could to enjoy the day and go on rides that could accommodate a wheelchair.
As I was not getting any better my parents decided to take me to the theme park medical clinic who rang an ambulance. I was eventually transferred to the Orange County children’s hospital ICU. After what felt like hours and after seeing multiple doctors and having tests done, I remember finally being told by the doctors that they had found a diagnosis, I had a rare condition called hypokalemia periodic paralysis which meant that my muscles weakened by low potassium effecting my limbs. The doctors told me that my potassium level was very low at 1.5MMOL that day. I was placed on a slow-release drip and monitored closely I eventually felt movement return to my body.
Still to this day now being 37 years old, being given a diagnosis was one of the best days of my life. It finally gave me certainty that someone believed me, and validation that the struggles I had been through were not psychological. I finally felt hope and relief that from that day forward I would have medication and support and I will be forever grateful for the care, empathy and thoroughness displayed by the American doctors.
For many years I have felt that I shouldn’t talk about my experience as I wanted to feel normal, I still felt embarrassment and shame and I wanted to fit in with my peers and not be defined by an invisible illness. I am learning now that it is important to share my experiences as it might help others that may have a child going through a similar experience. I still suffer from attacks but I am lucky to have a great specialist here in Australia where I now live and support from my fiancé and family.
Aimee in Australia