About me
My name is Ivana. I suffer from a rare neuromuscular and partly genetic metabolic disease called hypokalemic periodic paralysis with mitonic myopathy. Although I carry that sickness from childhood I felt some mild and unspecific symptom early in childhood, but first major symptoms I felt a few years ago in the form of fatigue, loss of strength, arrhythmias, fluctuations in pressure, vertigo, spasms, cramps, and even fainting. From day to day symptoms have progressed, so very soon there was no single day when I didn´t get something of this disturbing symptoms... I was slowly losing the voice. I found it hard to get dressed, my strength in muscles was weakening from day to day and heart arrhythmias got worst and worst ... As it usually happens when a rare disease is in question years and years of not knowing my diagnosis was waiting in front of me, wrong diagnostic and even convincing doctors that I am indeed ill was part of my daily routine. I k