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NEW CARDIAC MANAGEMENT
RECOMMENDATIONS
4
Marfan.org
MEDICAL INFORMATION
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
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.