What Is Red Man Syndrome?
Red man syndrome is a rare genetic disorder that causes the body’s immune system to attack healthy cells. A person with red man syndrome may have many symptoms such as: fever, fatigue, muscle pain, joint pains, nausea and vomiting. It is not known what causes it but there are several theories including viruses or bacteria that cause infections. There are no drugs available to treat it so treatment depends on the severity of symptoms. Symptoms usually improve over time.
Stefan Jovanovic was diagnosed with red man syndrome when he was just seven years old. His mother had him tested at the age of nine months after noticing that he seemed to be sicker than other children around her.
She found out later that Stefan’s father had died from cancer and his grandmother had died of leukemia before she could get treatment for him.
He has been living with his family in Sweden since then. He lives with his sister Eva and brother Jonas who is three years younger than him.
His parents live in Germany. Stefan says that he loves life here and feels very safe here because they all speak Swedish.
The condition affects one in every 500 people worldwide according to the National Institutes of Health (NIH). The syndrome is extremely rare and only one in every 20 people with it live past the age of 40.
People usually show symptoms in childhood or early adulthood. There are a few dozen known cases around the world at any given time.
Stefan was born in Germany and was just a baby when his brother was diagnosed with red man syndrome. He was recognized by the Steffan Jovanovic-Syndrome Foundation (SJS) at a very young age.
The SJS funds research into the causes, treatments, and eventually a cure for red man syndrome.
We interviewed him on May 2, 2018 at the SJS headquarters in Stockholm.
Can you tell us more about your brother?
He’s ten years old and in the fourth grade. He was also born with red man syndrome and still has many of the same health issues that I do. We both have many of the same symptoms like stomachaches, headaches, nausea, etc. We also both have trouble sleeping and get exhausted very easily due to anemia. One thing that’s different for him though is that he doesn’t have scars on his face. I had to get some surgeries to remove the scars when I was younger.
I’ve been living with my sister and brother ever since I was diagnosed with red man syndrome by the SJS. We do a lot of things together.
My favorite thing to do is play on the computer, but my brother is a little too young for that right now. He likes to watch cartoons and play with his toys. Sometimes we go out and do things like walk around town or go to the park. It’s a great way to stay healthy.
Would you say that living here in Stockholm is different than where you grew up?
Stockholm has a lot more people and things to do. There are also a lot more cars, roads, buildings, and stores. I’ve only been to Germany a couple times but I remember it being a little different than here. I was born there so I don’t really remember it clearly though.
Sources & references used in this article:
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