Connective Issues Spring 2019

MEDICAL Q&A You Asked, Our Help & Resource Center Answered

The Marfan Foundation’s Help & Resource Center, staffed by Jan Lynch, MSN, RN, answers more than 100 inquiries from our community every week. Jan works closely with Josephine Grima, PhD, our chief science officer, and the Professional Advisory Board to provide our com- munity with the answers they need to help them on their journey with Marfan, Loeys Dietz, vascular Ehlers- Danlos, and other connective tissue conditions. Here are some of the commonly aksed questions (and their answers). It is a common misconception that individuals have to be tall to be diag- nosed with Marfan syndrome. Being tall—or being tall for your family—is one of the more common character- istics, but it is not required. There are a number of outward signs that can be easily seen and some features that require special tests to deter- mine the diagnosis. Each person is unique in their Marfan features, even when there is more than one person in a family affected. This is why it is sometimes difficult for doctors who are not experienced with Marfan to make the diagnosis. I have Marfan syndrome and want to exercise. What exercise would you recommend? The Marfan Foundation’s Professional Advisory Board has established phys- ical activity guidelines for people with Marfan and related conditions. Exercise and physical activity are encouraged, but in a limited way to prevent damage to the bones and joints, eyes, and heart and blood Does a person with Marfan syndrome have to be tall?

t Jan Lynch , MSN, RN, director of our Help & Resource Center, answers more than 100 inquiries a week.

Levaquin, and Ofloxacin, should not be used in people with certain genetic conditions that are associated with aortic aneurysms and dissections such as Marfan, vascular Ehlers-Danlos, and Loeys Dietz syndromes. A review of several recent studies shows that people who have taken a fluoroquinolone are twice as likely to experience an aortic aneurysm or dissection than those who have not taken one of these drugs. The FDA has required a new warning about this risk to be added to the labeling of these medications. Before starting an antibiotic pre- scription, people should inform their healthcare professional about their history of aneurysms or genetic conditions, such as Marfan, vascular Ehlers-Danlos, and Loeys Dietz syn- dromes. If you have been prescribed a fluoroquinolone to treat an infection, do not stop the antibiotic without first talking to your healthcare profes- sional. As always, if you experience sudden, severe pain in the chest, back, or abdomen, it is critical to go to an emergency room immediately. Physicians should not prescribe fluoroquinolones to people with these genetic conditions unless no other treatment options are available. A statement from our Professional Advisory Board is on our website.

Photo courtesy of Marfan staff

vessels. In general, most people living with Marfan syndrome should exer- cise regularly through low-intensity (aerobic), low-impact activities adapted to meet their specific needs. Competitive and contact sports should be avoided. Each person should discuss what is safe for them with their personal physician. I have Marfan syndrome and want to inform my doctors about the recent warning about Cipro. Can you please give me the information I should share with them? On December 20, 2018, the US Food and Drug Administration (FDA) posted a new warning against the use of fluoroquinolones in people with Marfan syndrome and other related genetic aortic conditions. The FDA warning indicates that fluoroquinolones, a commonly prescribed class of antibiotics that includes Avelox, Cipro, Factive,

Do you have a question for Jan? Call 800-8-MARFAN x 126 or use the form on our website any time at .


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