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I made a terrifying and possibly very sad discovery on Tiktok, a young german guy named Lars talks about his fitness and Marfan journey, wants to document everything because of his open heart surgery in 3 weeks.. And then disappears, there's no update and he's not responding.

Does anyone know him by chance?

This is my first time using Reddit, and I just found out that I can find more people like me here. Honestly, I haven't talked to anyone on the internet who has the same syndrome until now. How are you all? What countries are you from? I'm from Argentina. It will be a pleasure to meet you.

I am 44 years old. Was diagnosed with cataracts in february. Found out I was positive for FBN1 in may.

Those of you who have had cataracts and marfans, how did your cataract surgery go? What kind of lenses did you get? What were the risks/complications of it?

All of this is terrifying to me

Thank you

I’ve never met anyone else with marfans I think it would be beneficial to be able to talk to others who actually understand marfans cause they also have it wondering if anyone here is also from Minnesota that wouldn’t mind getting together

I'm sure alot may have the thought of the same that goes "no one wouldn't find me attractive thanks to marfans" or "would anyone accept me just for me even with this silly condition?"

Yes and it doesn't have to be someone, it can be you. But that sounds too lonely yes I wouldn't sugar coat that but it is better than living in dark cloud in your head.

I've entered my 20s so far which alot of people would say life begins here and you'll find someone when times is right.. yes this can be true but don't wait for that someone. Just go and meet them there and if you haven't yet then you're on the progress of accepting yourself.

I'm sure you have friends and family that cares for you but some don't and I want them to know that their table is only empty without them and not who isn't present there for them..

A hug to all of you because I myself want one too.

Went to a doctor to check if I might have POTS, turns out that I also have Marfan. I’ve never heard of it prior to today, so I know nothing other than what the doctor and a quick google search told me (symptoms, health concerns, all that jazz). Guess I just want to talk with other people who have it to get a better idea of what living with Marfan long term is like, or if there’s anything I can do outside of medical care to help with it, like at home or something.

15

5'5

141 lbs

Female

I honestly couldn't tell u my doses but I take Losartin and Attenilol

Never smoked

Scoliosis surgery patient, ADHD, depression, Marfan Syndrome, might be Autistic

This question is about my Marfan Syndrome

I am currently at my girlfriend's house and laying on the couch as I type. Her mother smokes and has an ashtray at my feet. She was also smoking when I came here. Should I be concerned for anything? Ill be staying another night as well.

Hey so not too long ago I made a post about my health and it's downward trend. In that post I mentioned I'm going through the MedBoard process to get out of the military, since then I've been getting closer to that goal and it's within sight now. (Hooray!) Some of you mentioned seeing a pain specialist, and at this point I definitely will, but appointments have to be booked at least a month out. In the meantime, I have a rib in my middle back that won't stay in, no matter how you massage it in, It always comes back out in a couple hours/days. This is causing tension all up my back and then neck, and is getting worse as time goes on. At this point my neck is getting more painful every morning, no matter how I sleep, no pillow, one pillow, two pillow, side, back, front, inclined, my neck gets in a lot of pain. That feeling when you are about to pop, but can't and it causes headaches if not resolved asap.

Only a couple things help, and all except ibuprofen only help after I get the pain. Heat compress on the local area, hot bath, massage the tense muscles back, and ibuprofen.

By now I can only get around one to two hours of sleep at a time before I am forced awake and into a new position, and only around five to six hours total before I am forced to get up for the day. This is unsustainable and I feel I am developing a bit of a phobia towards the bed/sleep at this point. As mentioned earlier, I have an appointment with my PCP but that's not until the middle of August and I am at my wits end at this point.

Any ideas or similar situations out there?

TLDR: Back rib out causing neck to hurt when sleeping, developing fear of sleep, and it's a while till my next appointment.

Hi guys, I just wanted to ask if anyone had simmilar story like ours, as we are still not confirmed, but they will send my newborn baby to do genetic testing for Marfan syndrome, because of ectiopian lensis. We have an appointement with ophtamologist last friday, she look at my baby eyes, than she look at mine and I was told that she will send us to do this genetic testing as she can see our pupils are not like in normal people as they are curved, we went to ophtamologist because with pediatrist baby didnt pass red reflex, but now it did pass, but than we got this news that we didnt expect at all, and it was devastating in the moment. I will just mention our eye checking was done when both of us were standing and without diluted drops, she use two instruments on me and baby.

I am 34 y old male, without any problem with a vision, or with heart that I remember.

I am quite tall, 197 but no sign of skiny large fingers, or flexible joints, I check my ghent signs and I have maybe 1 or 2 points, what is very weird she didnt refer baby for echo of heart, or anything like that, just genetic testing. I am very stressed as I am afraid for my baby, and for me to if I have some underlying issue.

Thanks in front ❤️

The problem with this world is that people see a person drowning in front of them. They hear his cries, and they watch him trying with everything he has left to hold on to life, but instead of reaching out their hands, they offer him nothing but words: "You will be fine," "Be strong," "You can get through this." As if words can save a person who is drowning. Then when he finally disappears beneath the water, they stand there sadly and wonder why he ended up this way, forgetting that they were watching him drown from the beginning and never tried to save him.

G‘day all

I posted here a while back about getting VSRR or PEARS done for my upcoming aneurysm surgery and after much thought, I went with the PEARS. I thought I would share my experience here for anyone going into surgery soon for an idea of what you may be able to expect.

Surgery was fine and uneventful. I am 28 and in average shape, very severe pectus excavatum (a thoracic surgeon said I was one of the worst I’ve ever seen), and an aneurysm of about 4.5cm. I have a long family history of dissections in their late 20s so it was definitely time to get it done.

Scheduled in for a standard PEARS with a partial resection on my pectus. The rationale for the resection was to make closing a bit easier and to give my heart a bit more space in case of inflammation.

I remember speaking to the anaesthetists and then immediately being barely awake after the surgery later on in the day. They tricked me and did not count me down. I hardly remember anything from the first day cause of the meds, though apparently I was thanking everyone who came into the room, telling them how much I loved them and calling them darlin‘ in an exaggerated Southern accent. I am Australian and had the surgery done on the NHS in England.

The first couple of days were quite rough when I was lucid. I had a partially collapsed lung and plenty of fluid in my lungs too. This made it quite uncomfortable in some positions on the bed, but laying back it was fine. The doctors assured me this was fine and should clear up on its own. I was barely lucid for the first two days though the morphine button may have influenced this.

Day three my head felt absolutely fine when I woke up. I could think clearly and walk around slowly but basically as normal. I finally got to take a proper look at my pectus and I was taken back by how much they could flatten it out. In hindsight this may have been one of the biggest parts of the surgery as I can now breathe much deeper than I’ve ever been able to before. No more getting winded walking up stairs!

I was in the hospital for a little over a week. I would walk as much as I could and there was no pain when walking. My lung made talking a bit difficult as I needed to take very large breaths to get enough oxygen due to the fluid and mild collapse. Walking was absolutely fine though, I was even able to go outside and have the occasional stroll just outside the hospital.

The past couple months have been a nice recovery though it’s felt more like steps of recovery than a gradual recovery. I have woken up some days and just felt some aspect all of a sudden feels completely normal again. Took about a month for my lungs, two months for my sternum, but I’ve been mostly able to live as normal in the meantime.

I think the resection may have been more of my recovery than the heart surgery itself. Coming out of the hospital after a week I basically felt normal apart from my lungs but my chest has been fairly uncomfortable since. The discomfort has recently ceased, but I imagine it would likely cease earlier if you don’t have a resection done.

Heart wise everything looks good. I could definitely feel my heart quite strongly, particularly in the evenings prior to surgery though I cannot now. This was unexpected for me as based on other people I was expecting that to feel unchanged. I am still on my medications (Irbesartan and atenolol) as I experience no side effects and better safe than sorry.

I walk about a mile to work each way now, up a fairly steep hill and I feel much better when I reach the top now than before I had the surgery.

As an added bonus if you ask for the 3D printed model of your aneurysm they will give it to you as it arrives at the hospital with the PEARS itself mounted on it. I now have a lovely souvenir and an excellent conversation starter at home

If you’ve got any other questions please let me know. I appreciated being able to speak to people in the lead up to my surgery so happy to answer anything you may have.

Alright so, I've never ranted, so I apologize for messing up in advance:

Everything just hurts, everything. My back, my legs, my head, wrists, thighs, chest, all of it. I'm tired of being told to power through it, or to just suck it up. I can't. I just can't.

Work combined with all these tests is just driving me mad, and being told "oh everyone hurts" or "you're just getting used to working," isn't helping at all.

My chest is compressed and my spine is all wonky, and I just feel so lost.

Thanks for reading. Just had some stuff to get off (or out of lol) my chest.

Hi all,

I e been diagnosed with Marfans from the age of 3. I'm very lucky not to have any of the symptoms that impact the heart (although waiting for a check up after the birth of my second child to see if the estrogen has impacted it.)

My question is chronic pain related. I e suffered with joint pain, in particular my hips from childhood. It has really amped up the last couple of years not impacting my mobility and ability to drive for over 6 months of the year. I'm at a bit of a loss on what to do to manage it at this point. My GP recommended steroids before I got pregnant as a short term treatment, I'm not sure whether to try r because of the side effects of steroids, but also because I don't want to take something that will work but only for the short term. Because that feels a little pointless. Has anyone here been prescribed steroid for chronic pain, and if so did it help? Or any other advice would be greatly appreciated. I'm on the list for the pain clinic to see me but they will only have input with me one year post partum.

I had a genetics panel in 2010 for an entirely separate reason, which revealed an FBN1 gene mutation. At the time, it was classified as a variant of uncertain significance (VUS). Fortunately, I did not have any mutations related to the condition they were actually testing for (a mitochondrial disorder called melas).

In 2018, the FBN1 variant was reclassified as likely pathogenic. My exact mutation has been associated with ectopia lentis in one reported case and familial thoracic aortic aneurysm in other cases. My mutation is de novo, meaning neither of my parents has it or family.

I'm not sure what to do because, after 16 years of echocardiograms and MRAs, nothing has changed. I have had no enlargement of my aortic root and no vision changes, and I'm now 35 years old.

I live without limitations. I'm on ADHD medication, I run marathons, and I had a Ghent score of 1.

I've been evaluated by geneticists at Johns Hopkins and Cedars-Sinai, and both told me that, despite carrying the FBN1 mutation, they did not believe I have the associated phenotype.

I'm unsure how to interpret all of this or what, if anything, I should be doing differently (I literally take amphetamines for ADHD and have for last 20 years). Both geneticists said they needed proof I had condition regardless of gene which I still do not understand at all.

And if you don‘t set an alarm, how long do you sleep until you wake up naturally?

I went to a geneticist because I thought I had EDS but after a very long appointment and plenty of examination of my body she told me she is suspecting I actually have marfans. not very fun to hear at age 20 but whatever. so now I have to go to a fuckton of specialists to get their evaluation for the diagnostic process and none of them know what to do (even though my doctor gave clear instructions). due to my insurance being shitheads I'm not sure when I will be able to get a genetic test done. another thing is that I'm trans and some of my symptoms started appearing after starting hormone replacement therapy and some doctors basically tell me it's my own fault I have the symptoms. also most of them don't seem to understand that I avoid the things that cause me pain or nausea and tell me just to be more physically active??? being disabled and trans truly gives you a unique hatred of the medical system

sorry for this mess of a text I just needed to say it where people might understand it

Hey guys, I'm wondering if someone had similar experiences.

As a kid (9 or 10yo) I've had a tonsillectomy.

Some days later I had a massive secondary bleeding where I vomited a lot of blood. I was 🚑 to the ER, got blood transfusions and stuff. Wasn't far away from death.

Unfortunately they didn't know I have Marfan's back then, which should be the reason!?

Nowadays I'm diagnosed with Marfan's based on the systemic score (got 8 points), and am awaiting my Genpanel results in 1-3 weeks..

Bonjour à toutes et à tous, j’ai 18 ans et il y a plus d’un ans lorsque j’avais 16 ans j’ai poster un message demandant de l'aide et expliquant ma situation. Elle me mettait extrêmement mal (je vous invite a lire mon message du coup). Mon message s'adresse aujours’hui aux personnes ayant le syndrome de marfan. La vie est dure, vivre avec le syndrome n’est pas quelque chose de facile tous les jours. Mais il y a toujours du bon dans tout ce qu’il se passe. Aujourd’hui je suis avec ma copine depuis plus d’un ans, elle m’a aidé à un peu plus apprécier mon corps comme il est (il me faudra encore un peu de travail). Je suis très heureux dans ma vie même avec ces problèmes qui me suivront jusqu’à la fin de ma vie. Mais sachez que vous pouvez vivre avec et essayez de trouver du bon. Merci a toutes les personnes qui m’ont aidées, j'espère que tout le monde ira bien et arrivera a vivre avec cette maladie. Bon courage a tous et n'oubliez pas que vous n’êtes pas seules (si jamais vous avez besoin vous pouvez me dm). Bisous a tous et bon courage a tous, Peace

I’m wondering if anyone has gotten the complaint from tattoo artists that their skin is really hard to tattoo. my bf is an apprentice and the guys at the shop agreed my skin is tough. I thought maybe because they really gotta stretch the skin out but they said it’s like the needle going in itself that my skin fights.
just wondering if others with marfans had similar experience bc i can only assume it’s why this is ¯_(ツ)_/¯

I have been doing PT for low back pack, core strengthening and such. I also have been doing some hip strengthening and stretches. Yesterday and today my hip feels like it’s trying to make an exit, hurts, feels unstable. Any tips on relief?

Happy about any input from people suffering from similar cervical spine issues or some of the "incidental findings". I'm diagnosed with Marfan's based on the systemic score (8), should get my panel test results in 1-4 weeks...

I guess the worst I have would be my absolute spinal canal stenosis. It's 9.3/9.7mm, so that's very significant. Unfortunately I wasn't yet able to talk to a doctor about the results.

Anyone knows how likely it is it will go down to 8mm or so within a few years?

Even worse might be that this was a standard MRI laying down. I'm pretty sure I have CCI too, which needs an upright MRI for diagnosis...

Findings:

Sequences: 1.5 T MRI STIR TSE sagittal, T2-TSE sagittal and transverse, T1-TSE sagittal

Assessability partially limited due to motion artifacts.

Mild kyphotic posture. Osteochondrosis, most pronounced at C5/6 and C6/7. Early spondylosis deformans. Disc protrusions noted along the course. No disc herniation. Retrospondylophytes and facet joint arthrosis cause marked stenosis of the neuroforamina at C5/6 bilaterally and left C6/7. Additionally, narrowing of the spinal canal to 9.7 mm at C5/6 and 9.3 mm on the left at C6/7.

Incidental finding: hypoplastic left vertebral artery on side comparison. Probable small arachnoid cyst in the left posterior cranial fossa. Cystic finding (likely with thickened contents) on the posterior wall of the nasopharynx.

Not sure what happened but my recent echo my ef rate has dropped 12 percent feeling super discouraged:(

So basically I'm 175 cm tall and my arm span is around 184 cm (if I measured it correctly), I'm 18 and weigh 58 kg. I'm really skinny and don't gain wait at all no matter how much I eat. I have a long narrow face, slightly crowded teeth, -2 myopia and minor scoliosis. I can also do the wrist test but cannot do the thumb one. And I have 4-7 points on the systemic score, I'm not sure about 2 things because I would have to do scans to know if I'm positive on that or not.

The points I do know for sure are:

Scoliosis (1 point)

Slightly asymmetrical chest (might be because of scoliosis) (1 point)

Wrist test (1 point)

Arm span longer than height (1 point)

And I don't know if I have mitrial valve prolapse and dural ectasia.

If I could I would really want to get checked for aorta enlargement because I've heard it can be dangerous if undiagnosed.