Connective Issues Fall 2022

EXPLORING FOOT & ANKLE ISSUES WITH DR. ADAM BITTERMAN

The general session at the E 3 Conference featured many speakers, including Dr. Adam Bitterman, a board-certified orthopaedic surgeon, Chairman of Orthopaedic Surgery at Huntington Hospital, and Assistant Professor at the Donald and Barbara Zucker School of

Medicine at Hofstra/Northwell Health, who provided an outstanding talk on feet and ankles in Marfan and related conditions. In this edition of Connective Issues , Dr. Bitterman answers some of the questions attendees submitted at conference. u Does bone density affect the feet of those with Marfan syndrome? This is a question that we continue to investigate. There is no good data on the degree of bone density changes that can result from Marfan syndrome or the medication that is taken to manage Marfan syndrome. In general, osteopenia and osteoporosis are degrees of weakened bone density and can lead to stress injuries/fractures throughout the feet. u What doctor deals with bone density? I suggest having your primary care doctor involved in the decision-making surrounding your bone density and appropriate testing. In addition, an endocrinologist or a physician who deals with glands and hormones can address one’s bone density. u At what age can abnormalities in feet/ankles be identified in someone with Marfan? There is no set age where the deformity (deformities) This year, The Marfan Foundation’s educational webinar series for our community of individuals and families living with Marfan, Loeys-Dietz, and VEDS is focusing on what’s new in research and will be presented by a leading medical expert. As always, it is free to participate in these webinars, though registration is required. All webinars will be held at 7 pm – 8 pm Eastern. Following each presentation, there will be time for questions and answers. To register, please visit Marfan.org/resources/educational opportunities. If you have any questions, please contact Eileen Masciale, Chief Program Officer, emasciale@marfan.org. MARK YOUR CALENDAR: WEBINAR SERIES ON RESEARCH TOPICS

p Dr. Bitterman discussed foot and ankle issues and how to improve them with E 3 Conference attendees.

begin. They tend to evolve with time and age as one grows throughout adolescence and adulthood. u How do you know if you need orthotics and if they should be custom or off-the-shelf inserts? I recommend having your feet and ankles evaluated by a board-certified orthopedic surgeon or podiatrist to assess the mechanical alignment of your feet and better evaluate the indication/need for orthotics. They are not for everyone! u Is arthritis common in Marfan feet? Yes u Are AFOs (ankle and foot orthoses) and SMOs (supramelleolar orthoses) still recommended for children with severely collapsed ankles? Yes, they are indicated in many conditions that are causing pain. Not all deformities or flattened arches require these devices.

If you have additional questions about feet in Marfan, LDS, or VEDS, please submit them to our Help & Resource Center at Marfan.org/ask . You can also download our fact sheet on how the feet are affected from our website.

September 19, 2022 – Aortic Disease Research, Featuring highlights from the 2022 GenTAC Aortic Summit – Dr. Kim Eagle, University of Michigan November 8, 2022 – Physical Activity Research Dr. Alan Braverman, Washington University in St. Louis, and Dr. Siddharth Prakash, UT Health CURRENT WEBINAR SCHEDULE:

February 23, 2023 – Genetics Research Dr. Hal Dietz, Johns Hopkins

March 28, 2023 – Lungs Research Dr. Enid Neptune, Johns Hopkins

May 2, 2023 – Eye Research Dr. Jefferson Doyle, Johns Hopkins, and Dr. Deborah VanderVeen, Boston Children’s Hospital

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