Ungalahli Ithemba

Syringomyelia. A disease that hardly anyone knows about. Even doctors do not readily come up with this diagnosis because it is simply too rare. I had to make this bad experience for me when I was sent from one doctor to another after a car accident on the way to work with diffuse complaints. No one seems to know what is wrong with me, and worse, no one really seems to want to take me seriously. Several times I am called a malingerer by doctors and sent out the door. But my complaints are still clear: balance disorders, insensations, constant pain. Standing for long periods of time and even sitting are hardly possible for me anymore. It takes almost a whole year before the diagnosis of syringomyelia is made for the first time. Syringomyelia is a rare disease in which fluid-filled gaps ("cavities") form in the spinal cord or the spinal canal widens. There is no prospect of a cure for it to date. Only physiotherapy and pain therapy are on the treatment plan. Parallel to my odyssey across the medical specialties, I have to deal with offices, professional association, insurances and authorities. Hardly anyone takes me and my complaints seriously. Health-wise, I am hardly in a position to do so, but without one‘s own fighting spirit, one is simply lost. With my book "Ungalahli Ithemba" I would like to encourage other people not to resign in the face of strokes of fate, but to fight for themselves and their health needs. At the same time, I would like to increase awareness of the two rare neurological diseases Chiari malformation and syringomyelia and to raise awareness. The importance of widespread education is usually demonstrated by how difficult it is to be taken seriously with physical illness and blatant pain and symptoms.