The story of Viktor
Hello! My name is Viktor and I was born with a rare disease called Aarskog syndrome. My whole life is affected by this diagnosis in several ways. I struggle daily with learning and concentration issues. The syndrome if affecting my brain and my skeletal development. My hands and feet are short and wide. My little finger are bent inwards and I also have adhesions of the skin between my fingers on booth hands. The eyes in my face has drooping eyelids, which problem I have corrected with eye surgery in 2014. My genital area is like a shawl scrotum around my penis. All the doctors that I have meet with in life, doesn’t know much about this rare diagnosis. So it is really difficult to find good medical service and help for the problems that I have had and has. Luckily I have found a organisation named “The Aarskog foundation” in this group I can talk with several other people diagnosed with Aarskog, and we can help each other and share stories from our lives. I’m happy to share my story on rare disease day in 2022.