Connective Issues - Fall 2019

stepmother, daughter, patient, friend, and healthcare professional. I do my best to balance and prioritize my roles while taking time for my own self- care. I am also the advocate for myself and our children. With a lot of patience, understanding, and tenacity, I’ve developed working relationships with our physicians and we share a mutual respect for managing this condition. Another huge resource has been the vEDS community and getting involved in awareness and research opportunities. I am eternally grateful for the friends I have made and for the knowledge I have gained from others in similar circumstances. Connecting with other vEDS families has not only been comforting but also extremely inspiring. I’m very excited for the progress we are making and partnerships we’re building. I’m overwhelmed with hope for all of our futures.

course my test came back positive. For me it was validation with an odd sense of relief to have some answers. But then my daughter, Zoe, was given a vEDS diagnosis and I was utterly devastated. Thankfully my parents’ tests were negative. Then just a few weeks later, as fate would have it, I found out I was pregnant with my youngest, Izaak. Life was a roller coaster! I relied on my support system. I began connecting with other vEDS families. Being a nurse was a blessing because I understood what I was up against from a chronic illness standpoint and I could “speak doctor.” Emotionally, I recognized that I was experiencing the stages of grief. I was anxious, depressed, angry, and felt so much guilt for passing this on to my kids. Yet almost right after Izaak was born, I transitioned into the acceptance phase of the process. I had to move forward and take action. I am a mother, wife,

RELOCATING? Longtime community member and advocate, Chris Heaney, made the decision to relocate as a way to live successfully into his retirement. Here are some of the points he shares for others with similar conditions, who may be considering a move. Look for a city where you can get the same (or better) medical care than where you are currently. Evaluate the medical professionals in your new potential city for the expertise in treating people with your condition and their level of coordinated care across the specialists you see. Download our institution directory at Marfan.org to find hospitals where there is expertise and experience treating these conditions. Look for cities within reasonable proximity of your medical specialists. The number of specialists you see is likely to increase as you age so frequent travel to appointments, along with the potential costs, are important to consider. Consider what kind of weather impacts your health. For many with genetic aortic conditions, extreme cold or heat are physically stressful and hazardous. conditions community are more active. Connections with people who understand complex medical conditions are great for shared support and for helping identify medical professionals and other resources. Evaluate what kind of culture and activities are important to you now, and what may be in the future. Quality of life is important whether or not you live with a genetic aortic condition. Take a look at mass transit and rideshare options in your potential new city. This gives you a fallback if there comes a time when you cannot drive yourself to appointments. Research where members of the Marfan and related

TOOLS FOR LIVING SUCCESSFULLY ALL YEAR ROUND Learn new ways to empower yourself and improve your knowledge with free webinars at Marfan.org. All webinars are recorded and available for viewing whenever and wherever it is convenient. Topics cover a wide range of medical and quality of life topics, selected based on the needs expressed by our community members. UPCOMING LIVE WEBINARS

Neutral Corner Inc. “Stop Bullying” Patrick Ireland, President of Neutral Corner Inc. OCTOBER 10, 2019, 8:00 PM (EASTERN TIME) Medical Marijuana for Pain Jordan Tishler, MD, Cannabis Specialist NOVEMBER 18, 2019, 8:00 PM (EASTERN TIME)

OCT 10 NOV 18 DEC 9 JAN 16

Management of Dissections and Aneurysms in vEDS Sherene Shalhub, MD, University of Washington DECEMBER 9, 2019, 7:00 PM (EASTERN TIME) Dental Concerns in Marfan Syndrome & Related Conditions Sylvia Frazier-Bowers, DDS, PhD University of North Carolina-Chapel Hill JANUARY 16, 2020, 7:00 PM (EASTERN TIME)

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Fall 2019