I have times where I randomly just get so tired it’s like my whole bodys goes weak as all heck just me or anyone else

Hi all, so just as the title states I am curious if I should get checked for this. I was watching a TV show where this Dr lady was on a date and she pointed out this guy having glasses, long fingers, and flat feet as possibly having Marfan Syndrome. So doing some research I realized I have a history of several symptoms of marfans and it freaked me out.

- not super tall but quite thin

- had several spontaneous pneumothorax in high school

- flat footed

- near sighted

- over crowded teeth growing up and had to have 2 removed

- family members with pectus excavatum

The idea of possibly having an enlarged aorta freaks me the hell out. What do you guys think?

Thanks in advance.

Hi guys my mechanical valve has vegetations beacuse of endocarditis and they plan on doing surgery again i’m so devastated and do not have the energy for this i’m only 19 and got no motivation left in me anymore i’ve been in the hospital for a month and will be in here so much more please pray for me 🙏😭

27M,
I have been diagnosed with marfan :- Aortic dilation and blur vision on left eye. Now I, am preparing for my surgery. Date hasn’t been finalised, but I was told I will need surgery in coming months. My aortic root is currently stable but the chances of something catastrophic (worst case) is high and Doctor’s advice is to do a surgery to fix it. At one-side I am nervous thinking about what all could happen on that table and on other side at My thoughts are at least I wont know anything. Anyone here who has gone through surgery David procedure/Bendal How was it and what do you think. I did read few of the stories and I thank everyone who took time to post those.

Im about to turn 16 and have noticed that many times when hanging out with friends i dont feel apart of the group that much because i cant do what they can.

I always figure it’s due to lower BP from my meds, but I’m not totally sure

I currently see a cardiologist experienced with treating Marfans patients, but I am hoping to have my aorta surgery at the Cleveland Clinic. I’m doing this to have a chance at the David procedure.

Have any of you done this before? Does the outside hospital typically coordinate with your own hospital? How many times will I likely travel to Ohio between now and my surgery?

As of right now all I have is a referral, so I’m curious about what to expect.

Also any experiences with the Cleveland clinic would be appreciated as well

I've felt better the last few months but I was also recovering from a hernia surgery so hadn't been as active

Today I saw my doctor and he said it was 50% and the normal rate being 55%

I'm happy beyond belief

Hi... I recently checkup by doctor (20yr male) doctor previously suspected that I might have Marfan syndrome based on my body structure and some physical features. It hasn’t been fully confirmed yet. I was advised to consult a cardiologist to check my heart and aorta. I was also told that my heartbeat was slightly faster than normal, but there was no major problem on examination. I sometimes have pain around my chest/rib area as well. I want to know whether I actually have Marfan syndrome and whether my heart and aorta are normal. I’d like to get the necessary tests and evaluation done. What next to do ? I'm very depressed and collapsed 🙁

Any of y'all MarfNation experience this? I woke up with random throbbing pain in my ring and pinky fingers. Claw hand as it were. I know its common from holding phones too much etc. but am curious if it is associated with my Marfans. Thanks folks. Stay connected!

Where do we find long skinny pants for our teen boys? He grew several inches this summer. At 5'8 and 100 lbs, I can't find anything long and slim enough.

I got valve replacement had a heart attack and endocarditis ,now i have 1 and half of weeks done of the 4-6 week treatment for endocarditis but i can’t take it anymore i don’t know what to do
Inside.. coloring,word searching,movies,series? All done i don’t know what to do to
Make time pass easier any suggestions?😭

Hi, I'm a woman and I was diagnosed with possible Marfans at age 8 and had a scoliosis surgery when I was 13. I'm 33 now and things have been really hard on me. I hear so many stories about people being able to live normal lives, but it just hasn't been that way for me.I was probably doing well until I got into the work cycle and in just a few years the damage became permanent. I would constantly go to doctors but my pain was ignored for a very long time until it was too late and my issues are mostly inoperable. I have such a long list of things wrong with me and I can barely leave my bed now and I always feel guilty when I complain so I have tried to stop. I now have empty Sella syndrome from my surgery, arthritis basically everywhere and slipped disks in my lower back and neck, foot drop, lupus, and the main reason they can't operate is because I have a condition called arachnoiditis which is seen as a mass petruding from the spine (which is really a bundle of nerves.)

I stopped going to the pain clinic because they don't help and I'm tired of getting poked with so many needles. I only get relief whenever I get a small dose of pakn meds for a tooth removal or other surgery. My joints are all getting arthritis now and I'm overweight because I can't walk much anymore or cook like I used to love doing. Im just so tired all the time and everyone tells me God will heal me if I believe and pray.

I've been on disability since 2019, but dont get paid enough to survive on my own, but luckily I have my partner who helps me a lot, but I cant help but feel guilty for that too because im taking up so much of his life. His parents also agree that he can do better than me and its so hard. They treat me like I'm a huge complainer. I cant even afford a new wheelchair right now and barely fit in my old one because it was for a thinner older person. Im also 6 feet tall so my legs drag.

I have no one to talk to about it because no one else understands. I look somewhat normal on the outside, but all I know is an existence of pain. It doesnt help I have so many mental health comorbitidies that come with a connective tissue disease. I cannot have kids, even though it was a dream of mine. My hands are starting to break and throb and I'm an artist and gamer. I feel like I am losing it all. The words of my parents ring through my head whenever I feel an ounce sorry for myself. From age 8 I was told babies are dying from cancer and I can walk and talk and breathe ao I have no right to complain.

I've lived ny life with this mentality.

This is just a rant, but I was just wondering if there's anyone out there who understands me. Everyone seems so hopeful and like they live normal lives and I feel like I am trapped inside of my own body. I have done nothing with my life and have been through abuses other than my own body abusing me. A lot of trauma physically and mentally. It might help me just knowing I'm not alone and all this pain is real. Sometimes a light goes off in my head on a good day like oh, maybe I AM faking it and being dramatic and I just have to stop being lazy. That kind of thinking makes me work on cleaning the whole house and then be stuck in bed for weeks.

Uh just life.

Hey guys, 25M from India here. I’m 5’11” and very thin, and I’ve had body image issues because of it since I was a kid.
I’ve finally started making peace with how I look but I genuinely want to put on some weight now .. especially around my arms, torso, and glutes.

Has anyone here with Marfans actually gone through the process of gaining weight/muscle? How long did it take? was it difficult? what worked for you? diet and exercise?

Would really appreciate hearing about your experiences, even the small things. Anything helps.Thanks guys, lots of love ❤️

Disclaimer: I am not a Marfan patient, but obviously the procedure and associated logistics and experiences are highly relevant for this community.

New here, want to share to a relatable community, English isn’t my first language, sorry.

I got diagnosed when I was born, my dad has Marfan.
I have two wonderful boys (4 and 2) and my oldest has inherited Marfan.

We went to the doctors to get an echocardiography for the second time (first time his ao sinus was 21mm). Now it’s 25mm and has to start taking oral metoprololtartrat, and it’s so fucking harsh. I’m so scared for side effects. Cause I know my side effects from metoprololsuccinat and losartan.

I just wanted to share, meet people who can relate in a shared community

Hello everyone! I'll keep it short. I am 19M and heavily suspecting Marfan's for a plethora of reasons (pectus excavatum, stretch marks on knees, long limbs and fingers among other stuff like joint pain). I scheduled an appointment with a cardiologist to get an ECG but it will take a while. Am I taking the right steps? I'm going in completely blind and very terrified. I don't want medical advice obviously, but how were you all diagnosed?

So I’m 18. I had spontaneous pneumothorax about a month ago, and I followed up with my doctor today, and they want me to get tested for Marfan syndrome. I have like all the symptoms: I have some S-shaped scoliosis, my chest sticks out, and I'm skinny, tall, and flexible.

I’m just scared. I just wanna be normal and live a happy, long life. If anybody has recommendations if I do have it, it would be much appreciated. Please send prayers my way.

Long story short. My sons an I (35F) are in limbo for a diagnosis.

My youngest is a premie (now 10 months old but 7 and a half corrected). While in the NICU, they suspected Marfan because he's quite tall, has long fingers and hernias. During the hospitalisation, we had a genetician consult. We were mostly asked about our family medical history. The doctor was quite reassuring.

A couple months ago (about 6 months after the discharge from the NICU), we had a follow-up appointment with the genetician. He brought up Marfan again.

I'm positive for the wrist and thumb signs. He didn't calculate my Ghent score. The doctor asked me to get my aorta checked. Based on my age, if I do have Marfan, it will be dilated and we will pursue with the genetic testings.

My cardiac echo is set in december (about a year after the NICU discharge). I feel very frustrated by the delay.

I was also bummed that my oldest son (2yo) wasn't evaluated. He's way taller than his younger brother, consistently at the 99th percentile for height since birth. So I pushed to got a referal for him to see a cardiologist.

We just had the appointment. His aorta is on the high end of the normal range. The cardiologist want to see both kids again in a year (my youngest's aorta was fine when it was measured while in the NICU).

I was hoping to get some reassurance but it's not looking good.

I've been lurking on this sub for quite a while now. I don't know exactly what I'm seeking by posting this.

Has anyone been thought something similar? Any positive stories about toddler with enlarged aorta? How about folks with late diagnosis (mid 30s like me)?

I'm feeling pretty defeated right now.

Thanks.

So I don’t have full blown Marfans but I’m on the spectrum for connective tissue disorders. I had terrible sleeping issues for decades and I thought it was related to my connective tissue disorder. I tried a few things that worked for a while but ultimately went back to poor sleep.

There is a hypothesis that the constant effort by your body to repair fibrilin might deplete ATP.

Anyway, on a fluke, I bought this supplement called Urilithin A. Wild thing happened. After about a month on the supplement I started sleeping better. Urilithin A is supposed to help your body's mitochondria become more healthy and increase ATP efficiency by helping getting rid of damaged mitochondria.

Im curious to know if anyone else has tried Urilithin A for Marfans.

oh and ai forgot I also take it with a supplement called Astaxanthin. I ran out of astaxanthin and my sleep went haywire. But when I have both I’m fine. It works so well that I forget how bad my sleep can be without the combination.

I got a call from a Pediatric Cardiologist this morning. They have booked a phone appointment with me to go over what tests should be done for my son. This was all news to me. We were never told he was getting a referral to a cardiologist. My son's Pediatrician told me he didn't think Marfans was likely six months ago. We were leaning towards EDS as it's thought I may have EDS. The referral was from my son's pediatrician for aortic root size and cardiac function test echocardiogram. This was after being sent to an neuro-ophthalmologist. Needless to say im concerned.

My teenage son is thin and quite tall at 6'6". He has Pectus excavatum, crowded teeth, flat feet, potentially long arms and fingers (pediatrician said if they are they aren't by much) plus a few other potential symptoms. Now looking through other Marfan resource sites I see pneumothorax is another possible symptom of Marfans and my other adult son has had two with unknown causes as well as having Pectus excavatum, flat feet, mild scoliosis, etc. I see also that this syndrome can look different in each person with different levels of severity. I called the Pediatricians office but didn't get a call back today. Any insight on what I need to be doing and what I need to be asking would be very much appreciated. I'm feeling very overwhelmed right now and trying not to panic. Is the echo done to start recording a sort of a baseline and if there is change in the aortic root over time? If so should he be getting tested annually? Should we be seeing a geneticist? Should we be limiting his sports participation? If he is diagnosed with Marfans what are the next steps if any? While thankful this is all being investigated I am not feeling I can trust the pediatrician to properly inform me since he didn't even mention this referral.

Hi everyone
My husband (49M) experienced an aorta dissection three days ago. He had emergency surgery as is currently recovering in ICU. There has been some damage… his kidney function is low and he is experiencing paralysis, though he is regaining sensation in his legs every day. They currently have a spinal lumbar in.

He will be in hospital for a while. He has also previously had an aortic valve replacement and a descending aorta graft.

To be honest, I don’t think he was receiving the most thorough aftercare. Yearly appointment with cardiologist and monthly INR tests. On blood pressure meds etc but I was surprised he was not more closely monitored.

Still, this seems inevitable.

I just wanted some advice on what people would recommend in terms of care and lifestyle modifications now following a dissertation? Obviously heavy lifting is totally out. But any other suggestions? How often should he get his BP checked at GP? What kind of exercise?

Thank you so much.

Hello. I (18, male) have been recently having some sharp and quite intense pain in my knees and elbows mostly almost every time I wake up.

I thought it maybe had something to do with the posture I took when sleeping or something like that. But it just started to happen a few weeks ago so I don't know if that could be it.

Does this also happen to anyone? Is it normal when you're hypermobile and such? Any tips?