Connective Issues Fall 2025

Javiera González Arenas – Santiago, Chile (translated from Spanish)

Javiera travelled from Chile with her 15-year-old son Tomás who was diagnosed with Loeys-Dietz syndrome two years ago. She came to Conference seeking answers she could not easily find at home. “In my country, not much is known about this condition,” she said. “It is very difficult to find answers, so what better place than one filled with specialists and people committed to knowing and researching this and other similar conditions. Receiving answers from people who know and have years of experience is a tremendous gift.” At the Health Fair, Javiera and Tomás met with medical experts who provided new information they had not been able to access in Chile. “Thanks to the doctors, we discovered something new about my son that we didn’t get answers for in our country,” said Javiera. “With this knowledge, we can prevent other issues in the future. I also learned to live and accept this condition from a di ff erent perspective; this experience transformed my life. Our lives.”

 Tomás had an echocardiogram and consults with cardiology, genetics, and opthalmology. Pictured with Dr. Irene Maumenee

Jaime Nurrenbern, PT, DPT, LAT, ATC – Indiana Marking her first Conference, Jaime attended the Health Fair to seek help for complications she had been experiencing over the past three years while living with Loeys-Dietz syndrome. She hoped to find guidance from providers who understood her condition and couldo ff er new options for care. “This was a great opportunity to seek advice from medical professionals knowledgeable about LDS,” said Jaime. “Too often, I hear from providers that they’ve never heard of LDS or that they only remember reading about it in a textbook.” At the Health Fair, Jaime underwent an echocardiogram and met with specialists in cardiology, genetics, and vascular surgery. “Talking with the providers opened my eyes to new treatment options that I could bring back to my medical team,” she said. “It was so valuable to connect with experts who treat many patients with genetic aortic conditions. Now I have a trusted provider I can contact if my medical team has any questions, and I feel more confident managing my symptoms and treatments.”

“I would absolutely encourage others to apply to attend a future Health Fair at Conference. I was able to see experts in the field, and they opened my eyes to other beneficial treatment options that are safe for me.” ~Jaime

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