Haller index 10.7 and my aortic valve is dilated to 3.9
Anyone have similar findings? Did you just watch & wait with your valve? Have to have surgery? Tell me all the things!

Hello everyone. I am looking for suggestions for my dad. He's a little over two weeks post-op for aortic aneurysm. Surgery went well and he's been home for about a week and a half. The biggest problem he's been having is from not being able to sleep on his side. His backside and hips are very sore. He gets up to walk around and is mindful not to stay in one spot for too long. Does anyone have suggestions for what he can use at night to help take some of the pressure off of his hips and bottom?

Many thanks to anyone who can help!

Hello everyone,

I hope it's okay to ask this question here. I am struggling with a severe visual problem and would really appreciate hearing about your personal experiences.

I had significant zonular weakness and an unstable lens in my left eye. In March 2026, I underwent vitrectomy and scleral fixation of an intraocular lens (IOL).

Since the surgery, I have developed severe visual flickering and shimmering.

My iris visibly trembles when I move my eye. This is called iridodonesis.

Whenever I move my eye, even very slightly, I see bright arcs, streaks, and tiny shimmering particles of light, mainly in my peripheral vision.

The objects around me do not shake. It is only these abnormal lights that flicker intensely.

When I keep my gaze completely still, the lights disappear. As soon as I move my eye, they return.

Interestingly, my lens was unstable and moving before surgery because of zonular weakness, but I never experienced this kind of severe flickering back then.

I understand that some people with Marfan syndrome experience lens instability and iridodonesis, so I wanted to ask:

1. Does anyone here have iridodonesis, where the iris visibly trembles when the eye moves?

2. If your iris trembles, do you experience flickering, shimmering arcs, or flashes of light in your vision?

3. Are there people whose irises shake significantly but who have NO flickering or other visual disturbances?

4. If you have undergone lens removal or IOL surgery, did your visual symptoms change afterward?

I am particularly interested in hearing from people who have obvious iris trembling but do not experience flickering lights.

I have been suffering from this for more than six months, and it has severely affected my daily life.

I am desperately trying to understand whether iris trembling itself causes these visual symptoms, or whether the type and position of the IOL may also play a role.

Any personal experiences would mean a great deal to me.

Thank you so much for reading.

Hey everyone, hope you're all doing well. I'm 24 and work in tech/computer engineering, so I spend a lot of time sitting at a desk.

​I've noticed that ever since I hit my 20s, new pains have started showing up that weren't common before, but now I deal with them almost daily, especially in my back. On top of that, it’s really hard for me to keep an upright posture because my back gets tired very quickly—family and friends are constantly telling me that I need to sit up straight.

​Does anyone else experience something similar, or did you notice a shift like this around this age?

if anyone who has had the PEARS procedure at London Bridge Hospital i'd be interested in how their energy and mobility were for the first couple of weeks after the procedure.

i am having the procedure in December but its somewhat excruciating finding three weeks of accommodation in central London at that time. my understanding is that i may have appointments up to 1 1/2 to 2 weeks after release from hospital? i can find more affordable accommodation 45 minutes by train away. there might be a ten minute walk to and from the station.

i'm generally pretty healthy and walk 4km daily.

unfortunately doing this by myself and will not have family to assist me. will i be able to make these trips to the hospital in the weeks after i'm released from the hospital?

thanks a bunch.

As a Marfan guy myself, I’m a guitarist with 32 years playing pro for 10 years now. Last few weeks I’m starting to really feel discomfort while playing with the strap on the left shoulder and having really really sore muscles there like a rock.

What can I do? Do I have to change my job career? I’m really afraid of chronic pain as I was “healthy” until now.

Maybe Marfan just came and now I’m feeling it

Cheers, everyone

Prefacing this by saying I’m a hypermobile person with my dad having had an aortic aneurysm, later he in that year he passed due to a heart attack/descending thoracic aortic dissection.

I hadn’t really heard about Marfans until the other day when I went in for a potential subluxed shoulder and some pain. I’ve been suspecting hEDS (and POTS) due to other symptoms I have, but then the person asked if I’d ever heard of Marfans and she told me a little about it. I always attributed my dads heart problems to him being an older parent as well as drinking/smoking while I grew up (I’m 20) but now I’m nervous for if I do have it 😅

Of course I’m just hoping that I indeed have a marfanoid appearance and hEDS, but I of course want to look further into Marfans, because if I do have it I want to get diagnosed sooner than later.
Sorry this is kind of long, but I am now a little more educated on this new possible condition I may have, and am still looking into it!

I had my aortic root replacement with aortic graft and mechanical aortic valve I’m taking a break and getting drunk tonight Marfans does not rule my life I am sick of staying at home afraid of if I will have a dissection or die I am done suffering to this disease I am going to thrive tonight and I hope you are thriving as well

I (29F) was diagnosed at one year old. I’m the only one in my family that has marfans and its very lonely. I’ve had a lot of surgeries (fake monovision so one eye is far the other is near lenses that replaced my drifting natural lenses when i was a kid). I have two titanium rods in my back as i had bad scoliosis as a kid (this was fixed when i was 9).

And I had a pears procedure in 2018, but need a new surgery soon as this bitchy aorta likes to get a bit big. (I’ve had the scans and tests and nothing dangerous showing up, as im on bisoprolol & losartan.)

One of the many things I hate having this condition, is you feel outcasted in everything. I really hate the arachnodactyly (our long fingers & toes) and long ass limbs. I have never interacted with people with my condition, as I have been told they are negative and scare me with like more symptoms etc .
My husband is a normal guy, he understands it and is supportive. Which I love him for, as I’ve heard of stories where relationships don’t work out that well.
But does anyone feel like they are on borrowed time, as it’s unlikely to happen but my biggest fear is dying or going blind. And I just feel like yes it won’t happen (my retinas are always checked and given the all clear and my aorta is stable with the pears. I just have bad body dysphoria, when I look in a mirror it’s all wrong and I just want to see the perks of having this marfan stricken body instead of a laundry list of faults.

TL:DR

How can I calm down and be grateful for my shit body even though it’s caused my body dysphoria like no tomorrow.

Trigger warning ⚠️near death

I almost died this last weekend and it just hit me today. For context I've already had my ascending aorta replaced and its been almost a year since the surgery. I had my descending aorta dissect on me this last weekend and have spent the last week in the hospital trying to get med management to get my bp under control, I am considerably lucky to be a live and I am scared, the length of the dissection has me concerned for what my options are for possibilities and I just feel utterly hopeless and drained in the seemingly endless endeavor.

UPDATE:

First off, thank you everyone for reaching out and making sure that I'm okay and where to go for surgery options. I've spoken with my surgical team and the reason we're not doing surgery at the moment is so the surrounding tissue can "toughen" and is easier to work with since its in such a fragile spot(thats my understanding). They are also getting me introduced to marfans specialist upon releasing. It's been a long 3 weeks of trying to manage my blood pressure but we've finally stabilized it and i just had my 4th and hopefully final cta. Maybe ill post some of the most clear images of it, its 2ft in length so its going to be hard to capture in one go

TLDR; Diagnosed with Marfan through genetic testing but have an atypical presentation. Looking for advice from folks with similar experience or symptoms.

After years of trying figure out what was going on in my body I finally got referred into an Ehlers Danlos clinic and was thrilled to find a doctor who understood my symptoms and affirmed they were not normal. I hit almost every point of the diagnostic criteria for hEDS but needed to rule out the rarer subtypes and so did genetic testing.

When the tests came back last week both my doctor and I were surprised to learn I have a pathogenic mutation in my FBN1. I am neither tall nor thin, have no confirmed familial history (though now it’s suspected) and have no current heart or eye issues. What I do have is chronic pain, thoracic outlet syndrome, migraines, dysautonomia and severe joint instability.

I’m feeling a lot of things right now. I am glad to have a diagnosis but it is not the one I was prepared for and while my genes have spoken I really don’t identify with any of the classic Marfan symptoms. I have many new specialists to see in the coming weeks but I don’t even know what to discuss with them as I’m still trying to figure out how I fit into this diagnosis.

I suppose I’m wondering whether anyone here had a a similar journey or have a similar symptom set that is less typically Marfan (I do know it can present differently even in the same family) I’m open to any and all advice as I approach these appointments I’m feeling very adrift at the moment.

If you inherited through genetics, how did Marfans present in your parent? My mom and I have similar issues and are considered lucky in that Marfans presents mostly in our eyes rather than heart.

I always thought that Marfans would present similarly in my children but recently learned that is not the case and now I'm worried about family planning.

26M, diagnosed as a teen and never had any serious complications. Marfan’s only really been in the back of my mind except for my annual-ish cardio visits (my aorta’s still A-OK as of early summer). Suddenly in the last few weeks I’ve had the worst back pain of my life off and on, and today’s been the worst day yet. Any advice other than the typical rest/ice routine? I’m trying not to spiral about the ever-present complication-related fears.

Just wondering. I'm slim, the right BMI of 90kg at 202cm. The weight goes to my hips and stomach more than anything. I'm proud of being in good shape for my age but I'm not curious about whether it's partially down to Marfan genes and not just cardio, weights and not eating that much.

Let me know!

Hello all. My wife, who is just over 50 with Marfan Syndrome, has a somewhat quickly growing (but not emergency level quickly) cataract in one eye. We are struggling to find an opthamalogic surgeon in New England who is not just a "complex cataract" surgeon, but who actually has expertise/experience operating on patients with Marfan Syndrome or similar connective tissue issues that make a cataract removal more nuanced and complicated (i.e. zonular weakness, capsular weakness, etc.). Mass Eye and Ear, and the Yale Eye Center, seem like the most likely places, but we're struggling to identify surgeons even at those practices who seem to have this particular expertise. (And, as you might imagine, when we call the practices the very nice people who answer the phone don't know the sub-specialties and research interests of all the docs in their large practices, and tend to just say that all their docs are great and can do anything.) Dr. Venkateswaran at Mass Eye has documented/published expertise, but apparently isn't accepting new patients. Dr. Dagi at Boston Children's seems to have some of this experience, but currently seems to be focused on other things. Dr. Pineda at Mass Eye also seems to have relevant expertise, but also isn't seeing new patients. Dr. Davies at Mass Eye and Dr. Liu at Yale Eye also seem like good possibilities (i.e. lots of expertise treating the particular conditions in Marfan eyes like zonular instability, even if they don't have published work on Marfan's specifically). Hoping that someone has a recommendation for an eye surgeon who has actually done a chunk of relevant/similar surgeries, preferably in Boston but frankly anywhere in New England is workable (we are in Maine). Thanks very much in advance for any ideas!

Hi, my husband and i suspect Jim having marfans. We are waiting for his genetic test results to come back. We really want children, but when we talked about options, we both kinda ageee we want natural conceiving, without prenatal testing cause i dont want to termine pregnancy. We are aware of 50% chance of child having condition. We hope medicine Is good now and Will get even better and the condition can be easily treated. My husband says he Is do happy he exist and he is alive and that our child Will surely think like that too. Is it bad we think this way? Did anyone else think like this?

All my life ive had characteristics of marfan syndrome but never knew that marfan a thing until last year. Im 21M 6'2 with a 204cm wingspan and short torso, ive had bad near sightedness my whole life also.

Im making a refferal to a cardiologist today. I honestly dont know what Ill do if it turns out my aorta is enlarged and I have to stop training.

I dont want the one thing I have to be stripped of me.

Hi everyone!

I’m a F27 from Finland who has Marfan syndrome. I am currently part of a really nice WhatsApp group for young adults (from age 18 and up there is no upper limit) living in Europe who have Marfan, and we would love to have more people join us!

It’s a great, supportive space where we share experiences, chat about daily life, or just hang out with others in similar time zones. If you don't want to join the group but just want to chat here in the comments or via DMs, that is completely fine too! I would love to connect with more people who understand what it's like to live with this condition. At the moment we are 28 members in the group.

If you are interested in joining the WhatsApp group or just want to chat, feel free to send me a DM here on Reddit. You can also find and reach out to me on Facebook under my name, Elisabet Lundell.

Have a great week!

I’m under 18. I marfans to the point that its not fatal, and if my dad didn’t have it I probably wouldn’t have been diagnosed. I have the worst possible flat feet, very mild baby scoliosis . Knock knees. I was born with a hole in my heart but my parents were told it would heal and it mostly did but there are still multiple tiny wholes that some doctors actually didn’t notice untill my last visit. And many eye problems (dislocation of lense and I got surgery on both eyes, and complications from the surgery that caused the retina in one eye to snap? I only know it vaguely.

I did gimmnastics when I was maybe 5 but we unenrolled because I hated it. I wasn’t able to do anything as good as the other kids and I have a few fading memories of it. Anyways I always hated sports so unlike the usuals I was chubby/overweight (I’m a I love food person not I forgot to eat person)
I will do anything to get out of races or running at school. I am significantly slower than everyone else and by the time l finish the race everyone is “reseted” from the race ( like stop heavily breathing and stuff). I remember being about 7 and we were playing outside and ther other kids would ask to race with me to get the pleasure of winning. I don’t blame them they were probably just curious.
I once ‘faked’ not being able to breath in the end of a race and had to go to the nurse. I remember it was hailing outside and running in the cold is like torture to me. I don’t know if I fake or if I was actually
not being able to breath because when I was diagnosed they didn’t restrict me from any sports.

Anyways I’m happy to answer any questions I don’t get ‘triggered’ by that . Please share your experiences

Im surprised, I found out this isn't common. I refuse to believe that people cannot do this?!

I have pectus excavatum, mild one, but still. One of my eyes is lazy eye (amblyophia) and both stigmatism etc... but pretty mild asw. Everything is abnormally on a mild level. 1.90m tall and 65Kg, bare sinny.

Is this my subreddit?

I’m wondering if anyone in here has marfan and knits. I use compression gloves to help with the pain but it’s still stopping me from knitting as much as I’d like to. Is there a knitting style I should try? I knit English style currently.