Connect Issues Fall 2021

Our Virtual Annual Conference, held in July 2021, featured many sessions on medical and quality of life topics that are always of interest to our Marfan, LDS, and VEDS community. We are so grateful to the trusted medical experts on our Professional Advisory Board who shared their time and expertise to bring you the latest medical information and research updates. This year, we tapped our Volunteer Leadership Committee, chaired by Board member Heather Bergstrom, to provide guidance on conference content, especially the nonmedical topics that help people in our community live longer and better. Their input was critical to the creation of new innovative programming, including many sessions never offered before. Here’s an overview of a few of the conference sessions.

RELATIONSHIPS AND DATING WITH MARFAN, VEDS, LDS, OR A RELATED CONDITION “Dating is a human issue. Bringing in a chronic illness is another part of an identity that has to be navigated,” said Dominga Noe, a Foundation staffer who has Marfan syndrome. Noe, along with panelists Ben and Lindsey Weisman, Brandon Crawford, Isabella Marin, Tom Stone, and Anne Acardo, shared dating stories and experiences as a way to help others. The panelists all agreed that simply telling the person you are dating about the diagnosis makes it more comfortable. Then there is an awareness and no need to hide it. Open communication was emphasized many times on the panel. Still, they admitted that talking to a potential partner about what you can and can’t do can be difficult, but it is important to do so that you can find ways to have fun together in ways that are safe for both parties. “We all strive for ways to relate to each other,” said Dominga, “Especially in a relationship.”

PREVENTING CAREGIVER BURNOUT Caregivers are not typically prepared to deal with the impact of long-term care of a family member with a chronic, progressive condition. Chronic caregiving stress creates an emotional toll that can be devastating. “The rare disease community suffers from CTSD, not PTSD,” said Cristol Barrett O’Loughlin, Founder and CEO of ANGEL AID, an organization that offers relief to caregivers. “It’s chronic traumatic stress, not post-traumatic stress.” Cristol addressed the four definitions of support: information support, which includes information about the condition; tangible support, which includes child-care and help with daily living tasks; emotional support, which involves feeling validated and understood by others; and companionship support, which involves engaging in activities with others resulting in a sense of belonging. The presentation focused on the latter two areas of support – emotional and companionship – because these are too often neglected. To address

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