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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.

Can someone be clinically diagnosed, by two different doctors, yet the genetic testing shows no changes in the genes?

Marfan doesn’t rock 🤘

20 libras apenas son 9.5kg 😂

take care of yourself just like you are doing. much respect and love xx

Thank you for this❤

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…!

What about vitamin k to aid preventing further calcification? Wouldn’t that help?

Jan you are 100% correct on everything you have said, thanks

Thank you for sharing

beleieve it or not , content begins at 17:35

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.

Betsy you are a true warrior,I have nothing but respect 🫡

Hey Missy, Martin here. Thanks for posting this. Your story and your positivity and strength are inspirational to me.

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. ❤

great talk, thank you.

❤❤thank you for sharing your experience

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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.

( ascending + descending aorta ) / 2 × sin 30.hail the lord !

The information from these symposiums is so greatly appreciated, thank you very much ❤

Me gustaría información tengo un niño con autismo. O y recientemente te diagnosticado con loeyz Diets

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 marfans and I body build. I get tested and observed by doctors. Life is real. Live it!

el pepe

来自中国的患者，听到了一些希望～

Thanks for Ukrainian!

what an inspiration - thank you!!

Very informative - Thank you.

They help if there is a Heart Problem or Anxiety

Why does Atenolol or Propranolol work better for Anxiety / Panic then Bisoprolol??

Fantastic!! ❤️

Very beautiful women.

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.

Have you ever seen a ascending aortic aneurysm get smaller. I was diagnosed with one at 4.2 and now they say it is 3.6.?

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.

I felt. Didn’t know what it was, but knew it was serious.

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.

Look at these four legends getting together to try to understand and potentially repair the human body <3 amazing work, well done <3

Pero pienso que es un tema muy interesante ya que mi hijo lo padece