Diagnosed with Marfans Syndrome// Storytime 

Hi sweetie! I have Marfan, too. I a\have all the symptoms. Pretty classic. I had 2 kids. One with, and one without Marfan. I dissected at 4.4 aortic measurement, surgery for 12 hours, but I made it! This is 12 years later! My son with Marfan died at age 27. I love and miss him, so much. I’ve had almost 20 eye surgeries, but still see! Life is a huge gift! Live every day to the max! Thanks for helping spread awareness. It’s huge! Live large!

I have Ehlers Danlos Syndrome which is another connective tissue disorder, it has affected the majority of my body and I am pretty sick most of the time. Thanks for posting this video and raising awareness

Thanks so much for sharing about your Marfans. Look at all the people below who have also shared that they have it. I had heard of it, but had never heard much about the symptoms. I also have a rare connective tissue disorder called Scleroderma which also affects the whole body - most commonly the lungs. I have some heart problems, lots of aches and pains, etc. It's difficult to talk about health issues, so I applaud you in having the courage to share your story which helps others with chronic health issues. I often do not feel well and lots of people don't understand. Crafting is such a wonderful outlet for me. You are beautiful and have a beautiful family.

omg I love how positive you are.

Glad to see there is another fellow Marfan vlogger! I preach awareness on my channel too for this syndrome. I subscribed and look forward to all of your content. God bless you!

Love how positive you are!!💜

love the storytime! love you! ❤️

Thank you so much for your vlog! My daugter's doctor told us that there is a possibility of her having Marfan Syndrome but that she would have to go through testing. I don't have a family history of it and her dad was adopted so there is a shadow of doubt. Thank you so much for sharing your story. It gives me hope. Your child is adorable. Congrats!

Thank you for your awareness raising video. Also, I love your make-up and natural beauty. Blessings

God bless and keep you and the family!

Hi , my son as been diagnosed with Marfan syndrome, I hope people start to support and help the nhs and other organisations.

Thank you for sharing. I haven't heard of Marfans Syndrome. PS - new subscriber from YTMM Facebook group. :)

i have marfans too and im only 12. it has almost taken my life 3 times. i love that people spread awareness about this rare genetic disease

I think you should go and get another opinion from a cardiac specialist, better safe than regret. and you have an absolutely adorable kid. Stay healthy.

I have marfans syndrome. I am 5"91/2 about 147 I have most of the symptoms that were mentioned in this video.. And I'm having my first baby. No problems with me or the baby. My cardiologist have cleared me to carry my pregnancy to full term and have a normal delivery. But it is always nice to know that I'm not alone with this gebetuc disorder because as a kid I did.

thank you for sharing it looks like you have a beautiful precious family their very happy for you. I am researching and looking into Marfan as I have been diagnosed with an enlarged heart am still waiting on test results to come back from blood, urine, and X-ray. also after I was Diagnosed with enlarged heart I contacted family members to find out of medical history and found out Marfan is dominant in my family. what I cant make sense of is that I am a big boy that is overweight not the typical picture of Marfan that people would imagine. bless you and thank you for posting

Thanks for sharing!God bless!

Even I had diagnosed of marfans syndrome in 2015 I could relate so many things with your video

I'm 48 and I was diagnosed with Marfan's when I was 20. I went through a year or more of doctors and testing before I was finally diagnosed. I never had too many issues until I was 28. I was at work and started having heart attack-like symptoms. I was rushed to the ER where the doctor couldn't find anything wrong and admitted me for observation. Sometime after midnight, my cardiologist on call came in and did a TEC (thoracic echo cardiogram) and discovered my aortic valve was dissecting. I was rushed into surgery, with the surgeon telling my mother to get as much family there as possible, that he didn't know if I'd even be alive when he got into the OR. Obviously I came through surgery just fine, with a new mechanical aortic valve, which is still doing fine. My first words to the surgeon afterwards was, why am I still alive and he replied that medically speaking, I shouldn't be. It just wasn't my time, I guess. My aorta is still enlarging, but not enough to be concerned with, and I also have an AAA (abdominal aortic aneurysm) which isn't a concern yet. However, I'm on disability because of muscular and skeletal issues that only get worse as time goes on. There's no procedures or surgeries to help, so I just have to suffer. Anyway, I have a lot more to my story, but that's the basics. I'm glad you turned out to be fine, but remember: there are so many different types of connective tissue disorders that overlap, and can be just as dangerous as Marfan's. If you're not found to have Marfan's anymore, you need to still get checked out for one of the other syndromes. Best wishes to you and your family!

Wow you're very inspiring!

God bless you!

Same didn't find out myself and three siblings had Marfan's until 2000, My Dads aorta dissected, he was adopted. We have since all had heart surgeries and dissections, My Dad past away 7 years ago at 59 with cardio myopathy. ( not sure if spelling is correct)

Another Marfan! 🙌

My uncle and his son,my cousin both had Marfans.My beautiful cousin died at 16 while playing basketball.😔😔My aorta is enlarged, and thinking of getting checked.

I have Marfans, dislocation of the lenses is a symptom and so is sunked in chest. I have one child and did csection and everything was good. He did however inherit the syndrome and it is not easy.

my newborn baby was diagnosed with marfan syndrome. my baby's fingers are long and bent. and the joints of his hands like no muscles. and my baby's legs are bent. can my baby's feet and hands be normal when grow up?

I'm 13 and I've always knew I've had Marfan syndrome but November 2015 (I think) I had to be tested. I have it. So does my mum, uncle and grandmother but unfortunately my uncle and grandma died from it in their early 20s. I'm just so petrified for my future and I also want kids and I've been told I've got to have them young or I'll probably die. It just feels like I'm having to rush my life away and I'm still so young to be dealing with it all

I have Marfan syndrome too my sister and Dad have it too so I have pretty much known since birth I had a heart transplant 5 years ago due to an infection and my aortic graph and pacemaker was covered in infection I was put on a total artificial heart for 3 weeks while I waited for my transplant I still obviously have back and feet problems

Not saying that you have it and not trying to contradict your second opinion but I am saying you may want to go get a third opinion with a doctor that specializes in congenital heart defects like Marfan Syndrome. I was diagnosed in my early 30s, after having three children, and I ended up having to have open heart surgery. It was quite the shock. I didn't even know that I had a murmur much less Marfans and there I was going into surgery to have my aorta and valve repaired. Here is there reason I think you should go see someone else...every year since I found out and had my surgery I've gone in for a checkup and I've either had an echo or an MRI and some years I've had both. Then my cardiologist that I'd been seeing from the beginning, that also headed up the Marfans clinic, moved and went to another city and hospital so I had to find another cardiologist. I just choose the first one that popped up that my insurance showed was covered and went to see him. He barely looked at me and told me there was no reason for me to have all these test every year and that since I've had the surgery I'm fixed. I don't ever need to come back. I left feeling a little uneasy about the visit and after a few days called the office of my original cardiologist to see if she had a replacement and thankfully she did. I made an appointment to see him and when I explained what the last cardiologist said he explained all the reasons someone with Marfans needs to be seen regularly and especially someone with my history. That last cardiologist didn't understand Marfans well enough to know how to treat someone with Marfans EVEN though he is a heart specialist! Also, food for thought, NO ONE else in my family has Marfans. I am the ONLY one! You don't have to have a family background to have it. I've been both clinically and genetically diagnosed with it and it wasn't until one random surgeon heard a murmur in a pre-op for a hernia surgery and sent me for an echo that I even had a clue that I had a problem. Even then over HALF the time MOST of the people that listened for the murmur couldn't hear it. I'm not trying to rain on your parade I just want you to be safe and to be certain. You only need one marker from each category to match the doctors attention and from what you were saying in your video it sounds like you shouldn't be so quick to dismiss your first doctors assessment. Last thing... I did mention that I had three kids. They don't have it, thankfully and thankfully I didn't know that I have Marfans before I had them. I don't know if I would have rolled the dice with their health. Before you, or anyone, writes it off completely...there are studies and things being done and you should check it out and discuss your options with your doctor. Sorry for the novel!

I have it too and have a boy who is normal age 6

I was just diagnosed with Marfan I’m 41 and my root of my aorta is at 3.9cm

I was diagnosed at age 42. I'm now 61. I suffer all my life, with symptoms and various signs. I see my doctor regular and having annual eyes and heart check ups. I have scoliosis and did several surgeries, such as lumber spine, eyes, intestines and hands. I'm 5' 10"

I would go for yet another evaluation as it seems strange that many doctors have told you you have it, and one tells you you don't. I would also keep regular appointments to have that aorta checked. There is a new technology where from MRI or CT scan they can actually get the data to 3D print a cover (flexible material) that goes over the aorta kind of like a jacket to support it. While they still have to open the chest for the surgery, that's as invasive as it gets. No leaks, no rejection. Even if it's not Marfan's, it sounds like you do have a connective tissue disorder and that can, I believe, still leave concerns about your aorta. Good luck!

I know I should probably see a doctor, but I am not sure wether I have the syndrome or not. I just found out about that today in university. I was talking to a guy about sports and somehow we ended up talking about skin. I told him about my stretchy skind and he immediately said something about that marfan syndrome. I am a 24 years old male. I do rock climbing and several other outdoor activities. So yeah...giving up all these things is literally impossible for me. During my childhood, I always noticed that my body is somewhat different to other kids. Like I have super elastic skin...not too much but still more stretchable than normal, especially in the face. My chest is also sunken in a little, but due to my physique today, it's barely noticeable anymore, but I know its there. I dont have extremely long fingers or arms. I guess just a tiny bit over average. I've just been skinny during my adolescence and kinda still am, just more muscular. My joints arent that flexible. I am flexible, though, but I cant bend my fingers in all directions or stuff like that. Teeth are fine as well. So yeah...I guess I kinda have some symptoms to a certain extent...but what concerns me the most is that aorta dissection problem. I never had any heart conditions nor do I suck at cardio. Are there any elderly people with marfan syndrome who are still doing fine? I dont want to give up sports...I can deal with all the other symptoms...but the heart thing gives me the creeps. Thanks for all responses and best wishes to everyone dealing with that syndrome.

And chest sinks in

i have also marfan syndrome

Diagnosed at 15 X..

I have Marfan Syndrome. I have been Operated For Mitral Valve

I thought for a while that I have Marfans Syndrome. I'm a thin guy with scoliosis, have long fingers and flat feet. My skin is really stretchable but it always goes back. Not sure if I should seek out for a doctor.

I been told there is a Genetic test for it now

I have brittle bone disese another connective tissue disorder and marfans. I'm one of the only people in the world with both and it's a billion to one haha but they are different and the same and kinda cancel each other out as osteogenesis makes you short, tending to gain weight, elfin faced, pigeon chested etc and marfans makes you tall, thin, long faced, sunken chested etc.i do have a heart murmur and break bones but I probably look totally normal apart from my crazy long arms and fingers haha

I am a mother that has Narfan syndrome and this was made a while ago but there are ways to find out that you have it. I see genetics and how they diagnosed me at age 10 was through a blood test plus I have more then 3 characteristics that I guess qualify me for the syndrome. I am tall not slender , crowed teeth, leaky worth’s , scoliosis, eye issues I have recent been diagnosed with being legally blind due to the Marfans “attacking@ my eyes the most. I am on the edge about making a lifestyle/single mom channel and awareness channel but not sure

Have you ever had genetic testing? That could be very helpful for you and your child/children

And flexible joints

I have Marfans aswell

I have Mar fan syndrome i am 70 pounds and really tall 5 feet tall and I'm only ten years old and last time I went to my heart doctors I had a heart vessel swollen which is bad I think idk and my spine is curved and mouth is crowded and I take two heart meds flat feet and aourda is enlarged so ya byyyyyyyyeeeeeeeeeeeeeeee

And I also have long arms and fingers and legs

Hi guys! Is there someone with marfan syndrome who take some kind of medication for heart? Could you write the names of these drugs if so. Thank you!

Holy shit her eyes

Hey i am not sure but my friend is u know thin and when he wears t shirt i can see the strange i dont know to describe it on his chest I thought its just his chest and ribs are a little bit different and bcs he is thin but now when i saw there is syndrome abot that iam not sure. Thats the only thing i see in him evrything is normal just that weard chest

Is the child normal? I think i may have malfarns syndrome (me in the profile pic) so i am worried my children would not be healthy, so it would be great to know how your kid came out?

You could still have it.... I do and I have a child that I also passed it onto.. I was young though, I couldn’t have another child now.

So do you have it or do you not have

You can eat all the deserts you want !!!! Ice cream cake cookies candy

I have Marfans Syndrome and I am A mother of 5. Slightly enlarged aorta.

And I wear glasses

Sorry one more thing I've had eye surgery and might have to have heart surgery when I get older 😭😭😭😭😭😭😭😭

It would not hurt to get a geneticist test.

I had no ideea that being '' tall and thin'' is a bad thing lmao. As fot the teeth...have you ever heard of a tribe of islanders in Europe ...called the british people ?:)) Leting the jokes aside...you're perfect lmao !

i have marfan syndrome too. am a 50 year old man in UK

What's the difference between Marfan Syndrome and Marfanoid Habitus?

But what if the doctor which you sought a second opinion on was incorrect? They may have missed something. Since you meet so much of the criteria, I think it would still be good to see if an echo shows any signs of heart problems for your children.

So I’ve been thinking that I might have Marfan and I’ve done a lot of research about Marfan and EDS and other syndromes that are somewhat similar. Anyways I am a 6’1” tall 13 year old girl, I weigh around 135 or so and I have super large fingers and hands. I have hyper mobility in my fingers, knees and elbows. Also I had overcrowded teeth before I had braces. I’ve always had bad eyesight and the eye doctor said it would probably continue to get worse because I’m nearsighted. Also my skin is super velvety in some places like on the underside of my upper arms. I don’t know my families medical history and I don’t think I’ve ever been told that somethings wrong with my heart. I was just wondering if I should go to the doctor and get it checked out.

What is your shoesize? Does it affect the feet too?

Your very cute ❤️❤️❤️❤️❤️

They did a Gene test on me. It does cost a lot of money for this test. Marfans has caused all the discs in my back to fall apart. I have a half dozen that are pressing into my spinal cord. Nothing anyone can do. My Aorta is also swollen. They want to repair it but I don't believe this is a good idea. Why prolong life, so I can live in torture for more years. Check out my channel. I posted a very short video showing what Marfans has done to my ankles. Walking sucks.

HI honey. I have Marfan as well. Can people with Marfan end up in wheelchairs

ur beautiful

Omaygad

marfans might be linked to EDS

How on earth could they have told you that you have an enlarged aorta if you didn't all this time? You took all that medication for nothing? That's horrible! Or is it that you HAD an enlarged aorta and it went back to normal. I'm very confused!

You have marfan but its mild. Also, let me correct you. You can have children without marfan for pretty much 100% success. There is treatment before pregnancy. True for a man with marfan as well.

If you don't have Marfan don't mislead with your title. Don't waste people's time. You are not an expert.

Have you had a dna test to rule out Marfan? Just curious.

Hi dear do you have Instagram?

Is Martian not Marfan Syndrome. Alien hybridism. Very long arms & epee is advantage if you are thinking of fencing as sport. & is very advantageous is school yard games like tiggy. Picking up things or changing light bulbs. Disadvantage: finding rifle stock for comfortable & accurate shooting. Shoulder dislocations. Finding clothes that match arm length. I push up sleeves.

It’s sad she doesn’t know what she talking about..

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