Connect Issues Spring 2021

DADS’ PERSPECTIVES ON MARFAN, LOEYS-DIETZ, AND VEDS p Top row (L-R): Steve Marmpan, Jeremias Tays, and Mitchel Pariani. Bottom row (L-R): Adam Bitterman, Derik Utz, and Ben Weisman.

Every parent has a different family role and perspective, especially when there is a child (or children) with a connective tissue condition. And if the offspring inherited the condition from the parent, that can impact the family dynamics too. This Spring, we invited several dads from our community to share their insights in a special Personal Perspectives Panel. The featured panelists were: Steve Marpman, who has Marfan and has a young son with Marfan; Mitchel: “It’s important to make it known that you are more than your diagnosis.” Derik: “We take things as they come…You just have to deal with it the best you can, affected and non-affected kids…The Marfan organization is a great place to go to get info. They will point you in the right direction. That's what they do.”

Derik Utz, who has a young adult son with Loeys- Dietz; Jeremias Tays, who has VEDS and has two young sons with VEDS; and Adam Bitterman, who has Marfan. Mitchel Pariani, MS, CGC, a genetics counselor at the Stanford Center for Marfan Syndrome and Related Aortic Disorders, provided insights and Ben Weisman, who has Marfan, served as moderator. Here are some highlights: Steve: “Being part of the community has been so important for me…It was important to me to bring Alex [to the annual conference] too…The key for us has been to normalize it, not to over dramatize it or downplay it. It's important to make it so they can relate to it without it being scary…The reality is what you make of it.” Adam: “Have a positive attitude. It’s okay to feel down, it’s okay to feel scared, it's okay to feel shocked when you get that first diagnosis.”

Jeremias: “Getting a diagnosis of VEDS was a bit of a challenge, but as time has progressed, we have learned to educate ourselves and be our own advocates…VEDS or any of these conditions-- they’re not weaknesses, but rather strengths. You utilize it as strength to continue and not dwell upon it. At the end of the day, you have to live your life no matter what.”

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Spring 2021