In Rachel’s mind, being diagnosed with Marfan syndrome never felt like it accurately represented her. She noted that she had physical features that differed from those of people living with Marfan syndrome. Rachel always felt like she was on the outside looking in.

“I want to raise awareness,” said Paige. “I just want people to know [about aortic dissection symptoms and risk related to LDS]. I want someone else to have the opportunity that Derrick didn’t.”

In an effort to prevent others from going through the loss of a loved one, Stephanie and Carlos are committed to doing everything possible to spread awareness.

For the first time ever we were surrounded by people who understood us.

By Tammy

I was diagnosed with Loeys-Dietz Syndrome in March of 2020 at 53 years old. My father died after his second open-heart surgery when he was just 32 years old.  Loeys-Dietz had not yet been identified in 1971, but the geneticist believes he suffered from the syndrome as well.

By Missy

I am one of the lucky ones... On November 19th, 2022, I was rushed to Renown Hospital in Reno, NV where I survived an emergent open repair to a ruptured 8.7 cm abdominal aortic aneurysm. I had multiple blood transfusions and coded twice over a few hours. One minute I was working and the next I woke up days later in ICU. 

By Brenda

Our family discovered our LDS diagnoses in 2015, and while we have been focused on managing our care, we have not really had the opportunity to connect with other members of the LDS community. The stars aligned for us to attend Camp Victory together this October. 

I believe that my story is the perfect example of the power of awareness and education. Without those two things, a medical breakthrough, no matter how extraordinary, is rendered useless. My life, my daughter's, and future generations of my family will be followed by cardiologists, ensuring that aortic dissections do not suddenly and unknowingly take us away from our loved ones.

Growing up I assumed I was “normal.” I assumed my entire family was “normal.” For 36 years, I was not aware of Loeys-Dietz syndrome or that I was at risk from this genetic condition. In my school years, I suffered with severe allergies, asthma, and was diagnosed with a deviated septum after a spate of headaches at middle school.
Born in Telford in 1975, in Shropshire, England, I was the middle of three children.

I was born in 2004, exactly one year before Loeys Dietz syndrome found its name, so from the minute I took my first breath, I was a mystery. In comparison to my twin brother's healthy, squishy newborn frame, I was tiny and frail. My legs looked like they had been put on backward, and my fingers were crooked. Of course, everyone knew something was wrong, but no one in the world knew what that meant for me, what had happened, or how to fix it.

When our 12-month-old, Lincoln, was diagnosed with Loeys Dietz Syndrome, the first thing we and all of our providers thought about was what is Loeys Dietz syndrome and how do we treat it. A few said, "Its like Marfan syndrome, right?" We quickly learned through listening to lectures from previous conferences on the Foundation’s YouTube site that it was and so much more.

When Craig’s results came back negative for Marfan but positive for Loeys-Dietz syndrome we were so confused. We hadn’t heard anything about it, but after doing some research and talking to some of the best specialists in the states for this rare disease, we’ve come to know that it’s often referred to as Marfan’s evil cousin. Both are connective tissue diseases that cause weak tissue and aneurysms and dissections in the cardiovascular system. But Loeys-Dietz causes aneurysms and dissections throughout the body, not just the heart.

When Craig’s results came back negative for Marfan but positive for Loeys-Dietz syndrome we were so confused. We hadn’t heard anything about it, but after doing some research and talking to some of the best specialists in the states for this rare disease, we’ve come to know that it’s often referred to as Marfan’s evil cousin. Both are connective tissue diseases that cause weak tissue and aneurysms and dissections in the cardiovascular system. But Loeys-Dietz causes aneurysms and dissections throughout the body, not just the heart.

By Bridget Porter (Metz)

Thanks to a medical team that knew how to care for her condition, Yulia’s family is strong today. Yulia continues to learn and connect in ways that will make their tomorrows strong. Yulia’s family, their medical teams, and the LDS community – they are strongest together!

I'm still learning how to navigate the maze, but I'm finding my way with the help of many people. Like others have done for me, I hope to help others who are starting their own journey in the Loey-Dietz syndrome maze.

I am thankful that a doctor recognized the signs of Loeys-Dietz syndrome in my son and that now we KNOW. Knowledge is power, especially with this condition. Now that we know, we can take the proper precautions and monitoring, while living (mostly) normal lives.

By Tammy Asplund

I was diagnosed with LDS type 1 in March 2020, at 53 years old. But the story begins in 2000, with a visit to my son's pediatrician to get him ready for kindergarten.

By Rebecca Matte

Over the years, Rebecca Matte of Delray Beach, Florida, has been told she isn’t typical of people with Loeys-Dietz. Some doctors told her she didn’t look the part. Others told her she had Marfan syndrome.

If you look at his pictures, Riley looks like an average kid (if his shirt is on). He’s small but you would never know that this child has been through all the things he’s been through and still goes through all he does.

I want people to see Riley and see there is hope. As a parent of a child with a rare condition (or conditions), you might see a statistic on a piece of paper and feel hopeless. But then I want you to see Riley, out here beating every statistic and every odd, every day.

By Mehmet Tascioglu

By Bridget Porter (Metz)

By Peter Donato

Going through all the ups and downs of having Loeys-Dietz and the physical and mental toll it can have on people can be difficult at times. The resources from the LDSF and The Marfan Foundation were vital in helping me get through my recoveries and what to expect from talking with doctors to recovery. Being able to talk to people who have gone through the same procedure and pains can be very helpful. Without the people I have met through these organizations I would not have been has relaxed and confident going through them.

By Jannes Verheij

In 2006, we moved to another city and I was referred to the geneticists there. They just had visited a symposium where LDS had been presented and recognized some of the characteristics in me, especially my bifid uvula. A test was done and the diagnosis of LDS type 1 was confirmed. Because it was very rare at that time, my parents agreed that an article would be published on me and two others anonymously.

By Sarah Moore

Over the past 15 years I have lost my mother, had a high risk pregnancy, had a brain aneurysm repaired, had a chronic dissection on a carotid artery, spontaneously ruptured a pulmonary artery, dissected both my ascending and descending aorta, had a coronary artery fail, and I’m now waiting on a surgical date for the repair of an aortic root aneurysm. Without my Loeys Dietz Syndrome diagnosis I don’t know that I would have survived all these things.

By Stephanie Vargas

My daughter Jenacee was diagnosed with Loeys Dietz Syndrome when she was 4. I remember feeling scared, and helpless. From the moment she was born my mom instincts told me something was wrong, Jenacee was born with club feet, and her left eye partially closed (ptosis).

By Brandon Crawford

I like to tell people I'm one of the first in the world to be diagnosed with Loeys-Dietz syndrome. In 2006 I had my first major surgery, a valve sparing aortic root replacement. In the last 15 years I have enjoyed getting to know new patients and gaining life-long friends, lasting relationships. I've learned to be a shining light of hope and change for the future.