NatMarfan_Summer 2015 Mag.pdf

MEDICAL INFORMATION

NEW CARDIAC MANAGEMENT RECOMMENDATIONS

RESEARCH ON PAIN SURVEY SUGGESTS PAIN IS UNDERESTIMATED IN MARFAN SYNDROME Pain is underestimated in people with Marfan syndrome and it is probably under-treated too. This is what researchers at Northwestern Medicine found when they surveyed 993 people with Marfan syndrome. In the survey: • 67 percent of people said they had pain in the past seven days. • The average daily pain was a 4 on a pain scale of 1–10 while the worst pain was a 7. • Pain relief medicine was used by over half of respondents (56%), but about half of the people who used pain relief medicine said that they had less than 50 percent pain relief from the medication. • More than half of those surveyed (52%) rated “chronic pain care” from their doctors as either “poor” or “fair.” The survey findings—which were published in the Journal of Pain — support the need for improved awareness among patients and doctors about pain management options in Marfan syndrome. Researchers are continuing to study pain medications and patient outcomes to determine the most effective treatment plan. Thank you to everyone in our community who completed the survey.

ONGOING MONITORING CONTINUES TO BE A MAINSTAY OF MANAGING THE HEART AND BLOOD VESSELS IN MARFAN SYNDROME.

and blood vessels in Marfan syndrome remain the same: early diagnosis, on- going monitoring of the aorta and aortic root, and surgery to replace the aortic root or other enlarged parts of the aorta before a tear occurs. “The Marfan Foundation continues to prioritize research into new medical therapies that can help people in our community have a better quality of life and live longer,” said Josephine Grima, PhD, senior vice president of research and legislative affairs. “We are gratified to see that research is directly benefit- ting adults and children today.” To learn more, please download our revised guide about the management of the heart and blood vessels in Marfan syndrome from the patient resources section of our website. Also let your cardiologist know about the new rec- ommendations specifically for health professionals. They can be downloaded at: marfan.org/resources/professionals/ management.

The Marfan Foundation recently pub- lished new cardiac management recom- mendations for the heart and blood vessels in Marfan syndrome. The changes were made in light of advances in the field, including the results of the losartan vs. atenolol research published last fall. The new recommendations, which were developed by our Professional Advisory Board of medical experts on Marfan syndrome, advise that people with Marfan syndrome—even the youngest children—begin taking medication to slow the growth of their aorta as soon they are diagnosed with Marfan syn- drome. Medication is recommended whether or not the aorta is enlarged. Another change is that a higher dose of atenolol (a beta blocker medicine) is recommended. People who cannot take beta blockers can instead take losartan, which the research showed to have the same effect on the aorta as the higher dose of atenolol. The mainstays of managing the heart

4 Marfan.org