We are a nonprofit organization that empowers people living with genetic aortic and vascular conditions to foster optimal quality of life and longevity. We save lives through research and education that enables healthcare providers to offer best-quality treatment. We serve communities impacted by Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome and related conditions. To learn more, visit marfan.org or meet us on social media.
When Anna was talking about hypervigilance and being taught as a child with Marfan to be hyper aware of your body -- it took me until I was an adult to realize that the chest pain I experienced as a kid had nothing to do with my heart but everything to do with the extreme amount of tension I carried in my neck, shoulders, and chest from social anxiety. Sometimes we get so caught up with our "rare" problems that we forget to factor in "normal" problems.
I had this surgery...I still wished I'd died. You will NEVER be the same. 60% of the things I loved to do...I can't anymore. It's even hard to exercise because you can't lift weights and heart strain is a no no. I'm 59 and feel like I'm a dead man walking. Take care of your blood pressure. This disease was in my family but no decided to tell me until I was wheeled into surgery! And the pain was so bad they strapped me to my bed! I ripped out my IV and heart monitors so I could jump out a window from the pain! It's like your burning from the inside out! And the pain is so intense, but you don't pass out!
Last Good Friday, March 29, 2024, 3 months ago, I experienced an Aortic Dissection type B and the message from the vascular specialist that there is a high probability of Marfan. From that day on my life took a completely new direction.
Thank you to everyone! Especially love the ending respect to families... xoxo We are grateful for everything you're all doing, answers and solutions are obviously what we want/need. Praying that the momentum moves forward and we find a treatment and cure one day. Live's literally depend on it and we are grateful for this panel!
Thank you for sharing your story, Tammy. The amount of ongoing medical appointments needed for connective tissue disorders is so challenging, but I am thankful for the available medical care and resources that are available. #Invisible Disabilities
My condolences to you on the loss of your daughter. It is shocking to find out one has a rare life-threatening disease, especially as an adult, and then learning to navigate all the things. Thank you for sharing, Carlos. Let us all continue to fight the good fight and be there for our loved ones.
Merhaba Aylin,! Bende bir marfanli olarak seni çok iyi anlayabiliyorum. Almanya’da yaşıyorum. Ne kadar Avrupa’da olsa hersey göründüğü gibi deyil maalesef! Bende burda bir forum yani dernek gibi birseyler yapmayı düşünüyorum! Yakında İstanbul’a gelme ihtimalim olabilir. Belki Görüşebilir ve nasıl daha çok destek olabiliriz diye görüşebilir?! Saygılar selamlar…!
Really needed to hear this. The anxiety caused by a complication after a surgery is extremely hard to manage. Praying to go back to normal and take as much time as needed. Patience is key.
Thanks so very much for this upload. 42:41 just the comments on the tendency towards the thin side therefore not perhaps a candidate for weight loss surgery. ❤ Thankyou My gastroenterologist unfortunately didn’t know this and said I could not have EDS because I had weight loss. Unfortunately he also didn’t think my caecum lying lower than the normal position was of importance, although it can be found in literature as a rare manifestation of EDS to have any abdominal organs lying lower than normal. I truly hope that more awareness is exponentially growing with every view of EDS content. ❤
I am a young kid and got so scared about this I don't even need one for a link by time but I was getting scared that I'd like die on the spot just going into surgery
I had an aortic valve and graft implanted by Dr Coselli in January 1998 when I was 46 years old. Now I am age 72 and it is STILL working well. To anyone who is fearing the surgery I say "Go for it." it has improved my life in so many ways! No brainier.
I had an aorta root replacement, 1 valve repaired 1 replaced.. was hoping to go back to work, but couldn't... Had other things wrong.... I was 51 when I had it done.. I was the talk for the hospital in 2017.. still alive, just....lol
didn't make it thru the entire video. but here is what happened: i was a very good high school cross country and track runner, near state champion. amazingly, from age 17 on, at which time i also needed glasses, my track times progressively and mysteriously deteriorated. although i won a college race, i knew something was wrong. i cannot run at all since my 20s. i never thought about it much, as had professional, non physical jobs. but medicare age, +65, have had 3 retinal detachments. "marfan syndrome" by mayo clinic lays out my symptoms exactly: RRD, lens dislocation, slender build w long limbs, crowded teeth w braces at 15 all indicating a collagen deficiency (see collagen by cleveland clinic). i prob have stickler's disorder, one of +200 connective tissue disorders. it would take a $1500 genetic test to confirm this which i prob won't order. i can still breath fine, and for me, it is best not to think too much about it.
I have LoeysDeitz syndrom, another of those 200+ connective tissue disorders. My local hospitals would not test for less than $1500 per test as you noted. But I was able to find a lab on line that would do the testing for only $56. I had my local hospital draw the blood. They packed it in dry ice for me. I had to pay to overnight the sample. But they were able to test for much less. That was 10 years ago but I am sure that you may be able to find a cheaper lab if you shop around. I had to get quotes from 20+ labs before I lucked out. The lab was in Massachusetts but well worth the search.
@@vaughnnaber1079 thanks so much for the tip on the testing. i will try shopping around for labs. a diagnosis would explain just an awful lot of things about my greater family
Dural Ectasia has got to be the worst symptom of Marfan Syndrome. I always wonder, if i will ever be able to move and walk again when it strikes. Or maybe this time I will be paralyzed forever. It is comforting to know dural ectasia did not get worse over the years / with your study.
My best friend died from this a month ago at 35 years old after having an emergency open heart surgery. I still can’t make sense of how fast he went. I miss him dearly. There needs to be more awareness of this condition bc it’s such a silent killer if not caught on time. May all who have suffered from this and survived, continue to live healthy and happy life. Rest in peace to those we lost due to this horrible condition 🙏🏾
No-one with Marfan Syndrome should get married, it is a death sentence. Be careful babies, you are stronger than you could ever imagine, look after your hearts and protect them. I know you, I know your suffering and I know why. Self love❤ is all you need and I will love all of you always because you all take on so much, I feel it. I have Marfan syndrome, I am 34 years old and I have overcome my disability and I'm only getting stronger and I believe you all have the power to do the same. Increase your energy, be fearless, be strong. You are loved more than you know. Whatever happens you are protected and you will learn in time how powerful you really are. Understanding duality is essential, we have both light and dark aspects of our subconscious and our thoughts change the world. Be the change you want to see. Be the miracle❤
My age is 20. Does this thing will cure my eye lenses, Aorta, Scoliosis, chest bone without too many operations? I am tired of life. My friends and cousins are healthy and enjoying their life.
Thanks Chris, my surgery is scheduled for May 29th. My aorta is 5.2 and I'm 73. My Mitral valve will also be repaired at the same time. I am educating myself so I know what is available and recommended when I meet with my Cardiologist and Heart Surgeon,
So amazing to be able to part of the discussion of the future of CRISPR technology. The presenters were spoke clearly to their online audience with respect and compassion. Thank you.
