Ashley Burks was 23 when her life changed. That year, 2005, she excitedly attended the Marfan Foundation’s Annual Conference in St. Louis. Upon arrival she was overwhelmed with emotion—for the first time in her life she saw other women who looked like her! Lean and lanky with long faces like hers, they looked like family. And as she got to know them, she was overjoyed that they had Marfan syndrome like she did, and they understood what she had gone through in her life.
There were folks of all ages who had different features of the disease: some were more mild than she was while some were more severe. As Ashley visited with many of them, she met a young lady her age named Kristen, from Cleveland, who she bonded with quickly. Though they lived in different states, they agreed to stay in touch and have done so over the past 12 years through calls, texts, and even some visits. Their sharing with each other is built on a foundation of truly knowing and understanding each other.
While attending this national meeting, Ashley learned a lot about Marfan syndrome, and one thing particularly stood out. She hadn’t thought it possible, but she learned that some women with Marfan syndrome can safely become pregnant and have children. Wow! This changed everything for her and her husband, Josh, who were now delighted with hope and promise for the future. Ashley met ladies who had successfully had children, and hearing that she even had a chance to have a baby was encouraging.
At this Marfan meeting, Ashley discovered something else. She was eligible to take part in a critical research study on losartan and how it compared to beta-blockers. Over the course of the multi-year study, the hope was that scientists would discover which drug was more effective for slowing the enlargement of the aorta in Marfan syndrome. How thrilling that there was hope to take part in research that could potentially impact her own condition!
On the last night of the conference, the attendees gathered for dinner and a fond adieu. When Ashley arrived in her stylish outfit, everyone was impressed with her appearance! Many told her she was as beautiful as a model and called her their conference “fashionista.” Hearing such nice compliments warmed Ashley’s heart and boosted her self-confidence.
As Ashley left the St. Louis conference and her new friends, she was elated that she had attended. She felt better about herself and was better able to face her everyday life with a great feeling of self-worth. The conference helped her realize that she is a regular person who just happens to have a genetic disorder and she no longer felt different from everyone else.
"The annual conference was pivotal to me as a young adult. My husband and I were deciding if we should try to become pregnant or adopt. We found a wealth of information as well as the support we needed. It was also so comforting to talk to other women who had Marfan. We all look so similar that it felt like a big family!” said Ashley. “We shared the same struggles – from fatigue to finding clothes that fit. I also made a lasting friendship, and my conference friend and I have been there for each other through adoptions and hospitalizations. I would encourage everyone to attend a conference at least once."
Now 36 and living in Little Rock, AR, Ashley is a Medicare specialist who helps people plan for retirement, apply for Medicaid programs, and navigate Medicare. She only works part-time so she can be available for her three children in the afternoon. She enjoys hiking, camping, and volunteering for her church. She hopes to return to more Marfan Foundation meetings where she can get together with “her people.”