Connective Issues Winter 2024

have Marfan syndrome. Tragedy struck in 2017 when Jerome’s younger brother passed away during his wife’s pregnancy with their first child, Josiah. Then in 2021, as they anticipated their second child, Jerome’s older brother passed away due to complications from Marfan syndrome. “Both times, I had tears of joy because I’m expecting a child but yet tears of mourning and sorrow,” said Jerome. “Those moments of joy helped me focus on the positive and great things in my life and not just dwelling on loss - loss from my physical body, from vision, to the loss of family members.” Connection Leads to Healing Jerome first discovered The Marfan Foundation while researching his condition. He later attended a regional meeting and conference which proved to be life changing. “For the first time, I felt the sense of normalcy,” said Jerome. “I was able to be open about everything and not feel like an alien. It was amazing to be in an environment where other people understand and help you. That was one of the greatest experiences I’ve ever had.” Jerome continued building connections and working to improve his mental health by joining Marfan specific social media groups, getting professional counseling, and attending support groups hosted by the Foundation, including Grief and Loss, a monthly virtual support group. These outlets provided a community where he could openly share his experiences and improve his mental health. “I would get emails about the Grief and Loss support group, and finally decided to attend because I understood that in order for me to be the best dad, husband, and human being I could, I needed to take the first step,” he said. “I realized that I was not taking care of myself. I hadn’t mourned the loss of my brothers. Through these groups, I’ve learned to be grateful and appreciate where I am.”

 Jerome, left, with his mother and late brothers.

These days, Jerome is more intentional about maintaining a positive mindset and taking time for himself to improve his mental health and outlook. He enjoys walks, trying new healthy foods, listening to music or sermons, and interacting with his Marfan community. “It’s important to build a community because one of the most important things for your mental health is knowing you are not alone,” Jerome said. “There’s a weight lifted when you understand there are people going through something similar, and it’s a beautiful thing when you can help other people. We all have gifts and talents and bring value to the world.”

The Foundation offers monthly virtual support groups covering a range of topics. Feel less alone, share experiences, learn from others, and create bonds with others in our community. All support groups are free and there is no commitment. Try one out! Foster Your Well-Being: Join a Virtual Support Group!

Monthly Support Groups – Explore the groups that are right for you and sign up at Marfan.org/virtual-support-groups.

• 50+ Support Group • Coping with Grief & Loss • Kids Club

• Teen Chat • Teen Game Night • Time to Talk: Monday Matters (formerly COVID)

• Loeys-Dietz Connect • Marfan Connection • Newly Diagnosed/Seeking Diagnosis • Pain Management • Parents-All Conditions

• Young Adults • VEDS Connect • VEDS Parents

Be sure to check out our mental health webpage!

• VEDS Partners & Spouses • VEDS Parents of Kids 18+

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Winter 2024