Marfan's syndrome, a disorder of the connective tissue, can affect many body systems; including the heart, blood vessels, bones, joints and eyes.
About 1 in 5,000 people have the syndrome, which is caused by a gene mutation. Early knowledge that the condition exists can help an individual with Marfan's live a better quality of life and to survive longer.
Some complications of the syndrome can be fatal for a person with Marfan's. Selma Kerzman of Bismarck saw that first-hand when her first husband passed away after undergoing surgery to repair an aortic dissection.
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Katina Tengesdal/MDN - - Natasha Thorson, an individual with Marfan’s syndrome, a disorder that targets connective tissue, hopes to raise awareness of the condition.
"His first surgery happened when he was 33, and his last was when he was 47," Kerzman said. "In the early years of our marriage, when he was having surgeries, it was very difficult. We didn't know if he would survive."
"People with Marfan's are tall, they're thin, and they're constantly being told they should be in sports," Kerzman said. "But if they go into sports, dying young is a great problem. All the activity puts so much pressure on the aorta, it enlarges and you don't know it's enlarging, and then it goes on to rupture."
Kerzman's son was also diagnosed with Marfan's, so she knew early on that sports would be out of the question for him.
"We knew before we had him that Marfan's was a possibility," Kerzman said. "When he was diagnosed, we had the sense of, it's my fault he can't do some things. But, in the end, you think that this is a wonderful young man, and even though he has a few restrictions, God gave me a wonderful person."
For Natasha Thorson of Minot, who was diagnosed with Marfan's when she was 6 months old, restricting her activities has also become a necessity.
"I can physically over-exert myself, so I have to be careful not to do certain things like heavy lifting," Thorson said. "I've always known I can't play contact sports, and if I feel my heart racing, I just slow down. Someone not knowing that they have it could keep going, and that could be dangerous."
Thorson has suspected her daughter has Marfan's as well. Thorson's daughter is known to have a mitral valve prolapse, and she continues to visit a physician for regular checkups and to monitor her heart.
Individual people with Marfan's can display different symptoms, so those who are diagnosed with the syndrome won't know what complications they can develop. Heart problems can include an enlarged aorta, aortic dissection, or mitral valve prolapse.
People with Marfan's may be very tall and thin, and suffer from scoliosis or a chest that sinks in or sticks out. Eye symptoms are also concerns: Severe nearsightedness, dislocated lens, a detached retina or early glaucoma and early cataracts can all be problems.
Thorson has dealt with severe scoliosis, heart problems, and she has worn glasses from an early age. Growing up, she mostly kept quiet about the cause of her symptoms, but now feels Marfan's awareness is important.
"I was always kind of scared to let people know what it was, because I didn't really know what it was," Thorson said. "Now I've wanted people to know, because awareness is important."
"For me, I take everything as if it's going to be the last thing I do, because you never know with all the complications that can go wrong," Thorson said. "It does make you thankful when you don't develop some of the complications."
Kerzman recalled her husband's determination to live his life as he wanted, though she often worried.
"He wasn't going to let the disease get in the way of his life, and he'd go out hunting," Kerzman said. "I was always scared that something would happen. But I learned to accept that was the way he felt he needed to live his life."
Both Kerzman and Thorson hope to continue to spread awareness of Marfan's so that others can know about their condition and understand it.