By Nancy Seeman–Blonde hair, blue eyes, captain of the golf team, living life to the fullest in the best years of his life. The college years. But it wasn’t always this easy for Nick Hessa, senior at Morningside College. Just six years ago, Nick was diagnosed with a rare condition that would change the rest of his life.
“Blue rubber bleb nevus syndrome” was one of the scariest and most confusing sentences Nick had ever heard. His junior year of high school was supposed to be one of the best years of his life – golfing, getting good grades and all the girls – but his life was about to change drastically.
It all started when Nick noticed how tired he was after doing normal day activities. Such activities were just a simple golf meet or a workout in the gym; sometimes even a large set of stairs would do the trick to keep him down for hours after. After a few weeks of not having enough energy for the simple tasks, Nick described it as an annoyance and decided to get it checked out.
First signs
“All I wanted to do was sleep all day, and I knew something was wrong. A junior in high school who was healthy and in shape shouldn’t have wanted to sleep as much as I did,” Nick said.
Then began the long and draining process of figuring out what was wrong. Testing went on for months. Months of blood tests led to terrifying words: Blue Rubber Bleb Nevus Syndrome. BRBNS is a rare condition that is characterized by numerous malformations of the venous system involving the skin and visceral organs.
These malformations were found within Nick’s small and large intestine, eight of them to be exact. When doctors finally figured out, after hundreds of tests, that it was BRBNS, Nick said he took it in a calm manner.
“I was more relieved than anything when I found out what it was: relieved that we finally knew what was wrong with me, but scared as to what was going to happen. I knew it was a major surgery I was about to undergo.”
Treatment
He spent the next month and a half in an Iowa City hospital getting blood transfusions and undergoing a major surgery – not necessarily the normal life of a high school junior. Nick ended up getting way behind in school being in and out of the hospital for over a month.
“As far as school work went, I had to work my butt off doing as much as I could when ever I could to keep up,” Nick said. “As far as my social life, it wasn’t really affected. Getting healthy was what was important at the time and my friends understood that.”
Recovery
It was a long process, but a few weeks after surgery he was feeling back to normal. He began working out regularly and started being aware of what he ate and put into his body.
Many things contributed to regaining his health but family is an extremely important support system when dramatic times in health occur, and Nick realized this quickly.
“Without their support, I don’t think I would have gotten better as fast as I did,” he said. “Even today, my family is the biggest reminder that I need to stay healthy.”
Today, Nick is a healthy senior at Morningside College. Looking at him now, confident, muscular, and happy, the only evidence of the disease is a small scar about three inches long under his belly button.
Roommate and golf teammate Alex O’neill comments on his observations of Nick’s health: “I hadn’t even known anything happened to him ‘til I saw the scar. He explained what happened, but nothing had given me a clue before that anything had happened to him. He keeps himself pretty healthy so I have no worries about his health in the future.”
BRBNS does have a chance of coming back, so Nick is always aware of his health and energy levels. If he ever gets to tired is a normal day activity, a red flag pops up and he usually gets his blood tested just in case. Nick describes his feelings on the return of BRBNS.
“I’m not really afraid they will come back, but just aware of the possibility and try to stay as in shape and healthy as a can in the mean time.”
The future
Nick is now focused on his future. About to graduate in May with a finance degree, the future has unlimited opportunities for him. Not many people can say they have had a disease that has only 153 known cases in the world, but Nick doesn’t let that hold him back.
“I have a lot of goals and things I want to do in my life, and I know now that I need to stay healthy in order to accomplish these things. Through this whole experience, I learned to live everyday to the fullest. Anything can happen when you least expect it, therefore your health is something that should be taken differently and never ignored.”
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