Connective Issues - Fall 2019


We often hear that, for people living with Marfan, vEDS, Loeys Dietz, and other genetic aortic conditions, coming together for Annual Conference is life-changing. For many, accessing the expertise, education, and empowerment offered by Conference is a complete change from how they thought of their diagnosis before. Then there are those who take the impact of Conference from life-changing to life-saving. Linda Westmoreland, of Arlington, TX, and her family were in the latter category when they attended the 2019 Annual Conference, which was made possible because of the scholarship they received. This year was particularly important for Linda’s family as her husband and her 13-year-old daughter were both recently diagnosed with Loeys Dietz syndrome. Fortunately, for both, the Conference held what they needed most. Layla, Linda’s daughter, was grieving her recent diagnosis. Thanks to the scholarship that ensured her access to Conference, she was able to begin moving forward. “She’d just received confirmation of her Loeys Dietz diagnosis the day we got notification of the scholarship,” said Linda, “That pulled her out of a dark moment into an action-oriented one. We sat down that night and I am forever grateful to the family who made it possible for us to attend this conference. They have given me things that are priceless.

Photo courtesy of Linda Westmoreland p The Westmoreland family credits their Annual Conference scholarship with extending the life of their father and husband, William Sr., pictured far right in the top row. William Sr. and his daughter, Layla, pictured in blue next to her dad, both live with Loeys Dietz syndrome.

picked out which sessions she’d attend. She began looking forward to meeting other people like her.” Layla left conference with tools for advocating for her own care, building better sleep habits, and reassurances about her orthopedic and pain management. These alone would have been huge wins for the Westmoreland family. But Linda’s husband, William, was also along with a recent diagnosis. His doctors at home had identified grave concerns, but had not offered positive options for intervention. During the Conference Health Fair, the medical experts uncovered an additional aneu- rysm needing immediate attention. At first, this seemed like a nightmare sit- uation, but in the hands of the Health Fair medical professionals, it became a catalyst for hope. Linda said Dr. Siddharth Prakash, of UT Health, gave the family a very different perspective than what they had been given at home. Dr. Prakash told William, “You are 43. You have children. This is no time to give up. We can help you!” Between this meeting with Dr.

Prakash and the support Layla received, the Westmoreland family got information they can use to better advocate for themselves with their regular physicians and connections to top medical professionals to help continue to lead William’s care. The Conference, and specifically the scholarships that brought the Westmorelands there, saved a life. “I am forever grateful to the family who made it possible for us to attend this Conference,” said Linda. “They have given me things that are priceless. They have forever impacted a 13-year-old girl who was grieving her diagnosis. At the Health Fair, we were alerted that the care we were getting didn’t include enough monitoring. It is likely that, because of the experts we met at the Conference, I will have more time with my husband than I previously thought. The Conference gave us a community of people who make us feel at home because we know they understand.” Life-changing and life-saving all in one family. And all because someone else wanted to ensure access for a family just like the Westmorelands.

- Linda Westmoreland


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