Hello, my name is Trajano Cerna. I am from Quito-Ecuador, and I live in the United States. I went to School of Medicine for 2 years in Ecuador. I enjoy walking and doing exercises in the park. And I like drinking natural juices.
My story starts here – according to my mother, I am a prematurely 7 month baby with a normal birth; but “to grow healthy” I was put in an incubator. My childhood was difficult, I had several medical problems due to falls and head bumps. The first serious medical issue related to my health was the low vision. I was diagnosed with severe myopia and astigmatism at 5 years old. When I was 16 years old, I went through my first epileptic crisis. That time I used to live in Ecuador. The falls and head bumps were more frequent during my adolescence. Due to this concern I decided to visit a neurologist doctor in Ecuador. His diagnosis was an issue related to the central nervous system, prescribing me the medication “Valpakine”. I took this medication for several years in Ecuador. In 2001, when I was 24 years old, I migrated to the United States. My first medical appointment in the United States was with a general doctor who concluded that I had chronic epilepsy. A new medication showed up to my daily life, called “Depakote”. I took this medication for about twelve years.
At that time, the excessive medications and the lack of information of my medical condition contributed to my health getting worse. And I got the following diseases: gastritis, ulcers, arthritis, osteosclerosis, low hemoglobin, and very low vision. Life seemed like it was coming at me. This situation encouraged me to look for help and I visited several doctors (neurologist, ophthalmologist, hematologist, epileptologist, and genetics). When I was 36 years old, I visited an epileptologist for the first time. He discovered the type of epilepsy that I have, called “Progressive Myoclonic Epilepsy”. One year later, I discovered other symptoms in my health: fatigue, anxiety, cherry red spots on retina, severe seizures, jerky body movements and difficulties to speak among others. With all these manifestations and millions of tests, the doctors concluded that my real disease is called “SIALIDOSIS”. This is a weird and unknown disease around the world.
From 2018 to 2020, I belonged to the National Institute of Health (NIH) in Maryland, United States. At NIH, I was part of an investigation team to support trial studies and scientific experiments. The goal was to collect information about this unknown disease.
In July of 2019, I attended an ISMRD conference in Atlanta, GA, called Supporting Families with Glycoprotein Storage Diseases. I met thoughtful people in there, all with the same goal, looking for help. At the moment there is no cure or treatment for Sialidosis. We are waiting for scientists, pharmacists or health institutions to be interested in helping us.
Nowadays, I am 47 years old, I live in New Jersey with the care of my parents and always willing to support the science and help other families with similar health conditions than mine.