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.
Read MoreI 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.
Read MoreOver 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.
Read MoreIf 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.
Read MoreThe Marfan Foundation, which has funded 158 in research grants and initiatives since 1989, is proud to announce it has updated its research grant program to have a more significant impact on scientific advances to improve the lives of people with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. The new grants are designed to encourage and support transformational science.
Read MoreGoing 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.
Read MoreIn 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.
Read MoreOver 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.
Read MoreMy 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).
Read MoreI 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.
Read MoreSince 2005, my care has been coordinated with the recommended annual screening and interventions. The management guidelines, research, and publications supported by the ongoing efforts of the LDSF has continued to be a steadfast resource.
Read MoreI look back, excitedly holding my newborn baby, juxtaposed with the feeling that something isn’t right. Mothers know when things aren’t quite right. And. I. Knew. What I did not know, was that this new journey would take me on a completely different path than I ever imagined, and teach me lessons far greater than any book I would read.
Read MoreThe Marfan Foundation is pleased to name Angela Crist as the director of its new Loeys-Dietz Syndrome Foundation division. Angela will play a direct role in enhancing the programs, services, and support provided for the Loeys-Dietz syndrome community.
Read MoreThe Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for those affected by Loeys-Dietz syndrome. The Loeys-Dietz Syndrome Foundation will officially become a division of The Marfan Foundation on July 1, 2020.
Read MoreOur commitment to be involved with the Loeys Dietz Syndrome Foundation stems from our personal experience. Our grandson, Noah Padilla has Loeys Dietz Syndrome. He has had twelve surgeries thus far and we have been there for him every step of the way. We choose to be involved in fundraising not just for Noah, but for all individuals (and their families) suffering with this syndrome. Sometimes we think we have to do big things to make a difference. This is simply not true! Just remember that it all adds up! Every little bit.
Read MoreAfter accepting that there's always going to be complications down the road, I found that my world didn’t grow smaller like I feared it would. Instead, it expanded. How I chose to overcome these ‘bumps in the road’ have defined who I have become.
Read MoreI was born and raised in New Orleans, LA. I just made the big 40 in June and I could not be more excited! My 30s were a mix of the absolute worst and unbelievably best times of my life.
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