Des Moines University Presentation--September 3, 2004
   
Six families shared heartfelt stories about their personal experiences with the Marfan syndrome to medical students at the Des Moines University - Osteopathic Medical Center on September 3, 2004. Nearly 150 students attended the presentation.

Dr. Roberta Wattleworth opened the event with a general discussion about the Marfan syndrome, followed by short presentations by Marfan patients and parents of children with the disorder. Common themes emerged from all presenters. They included: Listen to your patients. Look for signs of the

Following is a brief summary of the presentations:

 
Teri Dean
From the time he was born, Teri Dean of Pleasant Hill knew something was unique about her son, Derek. Fourteen years later, following numerous visits with doctors and specialists, she finally got her answer. Derek had the Marfan syndrome. “When I first started researching the disorder, it said that Marfan patients only live to be 12-years old. We’ve come a long way in the last 20 years.” Today, her 32-year old son is doing well, thanks to his mother’s persistence. “It is extremely important that physicians are aware of all signs of the Marfan syndrome,” she stressed. “Not everyone (with the Marfan syndrome) presents the same. Not everyone is tall and skinny. Someone who is short and stocky with the disorder may be worse off inside than a tall and lanky patient.”
 
Bev & Dick Kiefer
Bev and Dick Kiefer of Indianola had never heard the words “Marfan syndrome” until their son, Scott, was diagnosed with the disorder following emergency surgery to repair an aortic dissection. In time, Dick, both daughters and two grandchildren were diagnosed with the disorder as well. Sadly, Scott passed away during a third operation in 2001. “No parent should every have to bury a child,” said Bev with tears in her eyes. “As a parent, grandmother and wife of someone with the Marfan syndrome, it’s something I think about every day of my life, yet I have to go on. Please listen to what your patients tell you and be aware of other things going on with them.”

Dick agreed. “Since I was a little boy I was always tall,” reflected the 60-year old. “I remember walking into the doctor’s office with this large hole in my chest. He didn’t pick up the sign that something much deeper was wrong with me. You have to look at all of the symptoms of the Marfan syndrome.”

 
Marsha Jones
“The last time I was in front of a large crowd I dissected,” began Marsha Jones nervously. Jones, a 39-year old from the Washington area, said she always knew something about her was unusual. “I sprained my ankles a lot when I was young. All the doctors said was ‘a lot of kids do that.’ Over a period of time I saw several specialists, but no one ever really paid attention to what was going on (with her vision, dental and skeletal systems).” It wasn’t until she was out of college that a doctor suspected she might have the Marfan syndrome. Unfortunately, she dissected before his recommended 5-year follow-up exam. “You can give a person a 90 percent chance of a better life if the aorta is corrected before dissection,” she stressed. “It’s extremely important to pick up on the little things that need to be put together (to reach a diagnosis)."
 
Kari & Haley Dostalik
The first thing Kari Dostalik of Urbandale heard after her daughter, Haley, was born was, “Wow! Look at those long fingers!” At the time, she had no idea this was a telltale sign of the Marfan syndrome. Haley was diagnosed with the Marfan syndrome when she was just 2-years old. “When Haley was about 1 ½ years old, we noticed she had extremely flexible, flat feet and took her to a specialist,” recalled Dostalik. “When it did not improve we were referred to a second specialist who noticed how flexible she was compared to the rest of us.” This eventually led to a diagnosis of the disorder. Today, Haley remains a normal, active 4-year old. “We are truly blessed that Haley was diagnosed at such a young age,” said Dostalik with gratitude. “(As future doctors) anything you can do to be observant of the young ones coming into your office would be wonderful.”
 
Linda Atchinson/Allan Jernagen
Linda Atchinson was diagnosed with the Marfan syndrome when she was 14-years old. At that time, the doctors told her she would die by the time she reached 30. Today, the 40-year old is thankful to be alive following an emergency surgery to repair an aortic dissection on February 14th of this year.

“When I went to the local hospital with chest pains, the medical personnel didn’t believe anything was wrong with me. They thought I was faking it,” exclaimed Atchinson. “They figured I didn’t have the Marfan syndrome since I am overweight.” Sixteen hours later, she was rushed to Des Moines where she underwent emergency surgery.

“Please remember that not everyone with the Marfan syndrome is a skeleton,” she stressed to the students. “My chest bone sticks out. I can do tricks with my hands. Make sure you look for other signs of the disorder.”

Atchinson’s 8-year old son, Allan, is currently being monitored for the Marfan syndrome.

 
Sherry Heldt
When Sherry Heldt’s 22-year old son, Shawn, complained of chest pains, the mother from Omaha took him to a doctor who, following a chest x-ray, asked if she had ever heard of the Marfan syndrome. The doctor immediately referred Shawn on to the emergency room and alerted the hospital that they were coming. At the hospital, the medical staff reviewed the x-ray, but failed to perform additional tests. Instead, they diagnosed Shawn with pleurisy and sent him home. Three hours later, he died as a result of an aortic dissection. It wasn’t until Shawn’s autopsy that they determined he had died from complications of the Marfan syndrome. Later, Heldt learned that she had the disorder as well. “If those doctors would have listened to us, Shawn may still be here. I told them that I’d had aortic valve replacement surgery and an aortic aneurysm but instead, they chose to ignore us and misdiagnosed Shawn,” said Heldt with a sigh. “Please (medical students) open up your ears and hearts to your patients and just listen.”
 
The presentations were well received by the medical students. Many thanked the participants and stopped by following the event to discuss the Marfan syndrome. The Heart of Iowa Chapter – NMF hopes to make this a bi-annual event at the University.
 
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