Marta Dias of Lisbon, Portugal sees the Foundation’s 2024 Global Virtual Conference as a unique chance to find expert advice, community and belonging without the prohibitive logistics and expense of travel.
“Technology gives us the opportunity to be able to connect to one another so that I can express to my local doctors what is going on [with the latest in Loeys-Dietz syndrome (LDS) expertise] and help them make a better diagnosis,” said Dias. “I am trying to understand and support knowledge.”
Accurate information is especially important to Dias as her 13-year-old daughter has recently experienced medical complexities related to LDS that weren’t easily solved in her local emergency department. She said it is hard for doctors in her area to have a baseline understanding of LDS as well as to grasp the variations and differences between individuals with the condition, given its rarity.
“People with LDS have to be evaluated differently with a little more care,” said Dias.
While Dias has more access to medical support in Lisbon than in more remote parts of Portugal, she still finds that many available providers are unfamiliar with rare conditions like LDS and rely on Google in order to create treatment plans for her family.
“As a parent, I stood stumped [in the emergency department]. Something should be different. It is better to talk to experts,” said Dias.
Dias comes from a family of people living with LDS: her father, herself, two of her brothers and her daughter have all been diagnosed with the condition. Dias learned she had LDS after initially being diagnosed with Marfan syndrome in 2014 during her pregnancy. She hopes to gain the most up-to-date information available on LDS during Conference 2024.
“Virtual Conference is very helpful because I can learn more about what is happening today. If we can hear doctors talking about what people are doing [for treatment, quality of life] and risks, this is very important,” said Dias.
Dias says the Foundation’s digital footprint, including our website — which is available in 25 languages — is a really helpful resource, and also one that creates longing for additional connection. “I see the website, Facebook posts, walks, camps — something I wish I had the ability [to be part of],” said Dias — who in addition to medical information is seeking community via Virtual Conference.
Virtual Conference provides the community Dias seeks, she said. “We just need someone to [whom we can] express our ideas, feelings, anxiety about all of this,” said Dias. “It’s important to be able to talk and understand more. It’s makes us part of something.”
To sign up for the Marfan Foundation’s Global Virtual Conference 2024, visit marfan.org/conference.
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.