My story began almost exactly 31 years ago when I was first diagnosed with Nephrotic Syndrome (MCD). My parents, concerned about the situation and the lack of information took me to the USA. Little information was added to my condition. So it was an unfair battle almost between me and my family against this disease at that time, because there was not enough information that exists nowadays.
During nearly 20 years I have taken very high doses of cortisone. I can’t say they were easy times, but I can say those times were about learning and growing, physically, mentally and spiritually, that made me the man I am today.
At the moment, I live a relatively normal life with only the difference of having to take medication daily. This whole “experience” has taught me to live more quietly and give value to what is really important. To all parents with children with this disease or patients with this disease, I only have one advice: Love yourselves and do not be discouraged by this condition because life is too short to feel sorrow for ourselves.