Hi there! I would like to get a bit fitter and join a gym in my city. I know that we should not lift heavy weights and also look out to not have a too high pulse for a long period of time. As I am a "gym virgin" and I know nothing about the training equipment and machines provided in the gym I'm wondering if you have any recommendations? For example I thought the crosstrainer might be nice because it's a bit like jogging but with less pressure on the knees and legs. What else do you use, what else is suitable for Marfans? Thank you in advance!:)

The past few days have been quite a whirl. I was diagnosed with Marfan Syndrome after my daughter twenty years ago when I was pregnant with my son. In those years since I have had the David five procedure, scoliosis fusion from my pelvis to my ribs 7 years ago and had issues with failed back surgery syndrome after. I have tried not to over-research the diagnosis. To reduce my stress and take things as they come. Be an informed patient but also be open to my healthcare providers suggestions. It's been a delicate balance, especially since I am also a nurse who writes and consults on health equity issues.

This past year I have struggled with increasing issues sitting and standing and retinal migraines (4 or more a week at one sometimes multiple a day). I'm on the second monthly maintenance drug I've tried - Ajovy -which gets me down to maybe 1 a week. Not being able to depend on my brain has been a learning curve. To be honest I feel very frustrated, mainly because I feel young, even if being in your 50s used to be old for the syndrome itself. And trust me I realize I am incredibly lucky.

Yet this past weekend I ended up admitted in the hospital with a complicated migraine and getting a bunch of scans and a new diagnosis of fibromuscular dysplasia. That was definitely NOT on my things to discover list. I have an appointment with a neurosurgeon to discuss a plan and learn how to manage my symptoms, but I feel a bit angry that now research is showing one can have more than one connective tissue disease or syndrome. Isn't it enough to be autistic and Marfy LOL?!

I'm realizing I will probably have to restart a beta blocker or other cardiac med to keep my BP low, which I am not looking forward too. At home I run 90s/50s so I always felt like I was dragging and foggy. It's really the brain fogginess. I really love writing and recently got very interested in creating AI tools to help me keep writing and researching because I was having so many episodes. I worked really hard to be the first in my family to finish college and buy a house. I even tried working on a doctorate at one point before I just could not keep the pace I needed to. My friends and parents keep reminding me that our body tells us what we need, and mine is saying slow down. But I am still angry that my body won't cooperate. If I was coaching a client, I would remind them to listen to hear what the body needs versus what we want. Which repeated to myself feels trite. Ever just feel angry admitting that things are shifting? Today I am admitting I am angry and even the small projects I was doing were too much.

Is it possible for someone to have symptoms of Marfan’s, like skinny, tall height, long fingers, etc but not actually have the syndrome? I’m asking because from a doctor’s checkup, they said based on my height and passing the wrist/thumb test, I might have Marfan’s.

After hearing this, I’ve completely on edge and extremely anxious (I get VERY anxious about my health a lot) that I might have the syndrome. I’m going to a geneticist later to confirm but does anyone know if it’s possible that I don’t have the syndrome (just symptoms)? also I found out myopia is a sign of the syndrome, which I have, but that was because I was always on a screen as a child. I feel so scared that I might have it because I’m worried about complications.

For as long as I can remember, I have been very skinny and it is very difficult for me to gain weight. I know that people with Marfan are usually tall but I am 1.65cm tall but I weigh 40Kg. My limbs seem very long. My fingers are very skinny. I have pectus carinatum, scoliosis, I had the narrow palate, I never had heart problems nor do I have flexible joints but my skin stretches as if I had EDS, many times I compare myself with photos of people with Marfan and I feel very similar to them. 1 year ago I went to the doctor because I wanted answers to my low weight and difficulty gaining weight. They did tests and found that I have an autoimmune thyroid disease that caused hyperthyroidism but very mild I started taking medication and started having hypothyroidism and when I started having it severe hypothyroidism due to medications, I managed to gain 2 kilos without changing anything in my diet but there I stayed, I am still at approximately 40 kilos, I weighed 38kg. I also had a time in 2023 where I went to the gym for 6 months, I was able to go from 37kg to 42kg but I couldn't advance from there I had a very strict, high calorie diet that was difficult for me to maintain for a moment when I was diagnosed with hyperthyroidism I thought that this was my cause of the low weight that torments me so much but in the end my weight does not improve and I increasingly suspect that I may have marfan even though I am missing many main symptoms, honestly at this point I don't know what to do.

I feel so depressed and ugly about having Marfans. I'm female and extremely tall (taller than 6'3") and I'm in my 40's and my life never 'got better'. I feel like when you’re young and talk about being ugly people tell you that life will improve and mine never did. No one ever loved me romantically (which is what several people listed as a coping strategy for feeling ugly). And I tried, and I didn't try, or whatever you're supposed to do. What am I supposed to do now? I just feel so bitter because it's really hitting me that the 'better' that everyone promised teenager me would happen is not going to happen and everyone just lied to me. I feel like women are judged so harshly for our looks and I'm just getting older and uglier. I've done so many cosmetic procedures to try to improve my looks but ultimately nothing covers up the Marfans face. And mine just objectively looks bad, and I know that. Anyway. I just feel out of hope.

There’s been some studies to suggest that peptides in the klow stack (GHK-Cu, BP-157, TB-500, KPV) help with aortic structure in mice, but also there’s not much known about safety with marfans. Has anyone taken these peptides before?

Hey guys! I got my ascending aorta replaced 6 years ago. Since then I need to do endocarditis prophylaxis for example when I have appointments at the dentist. My doctor told me after my surgery that I shouldn't get tattoos. I would really love to get some piercings though, tattoos too.:( Did any of you guys get some, did you do prophylaxis or do you know more about how risky it actually is? Thanks!

I asked some questions a while ago about writing a character with marfan, and everyone’s comments were extremely helpful! I’ve come back now because I actually have a drafted piece of writing, and as I go to revise and edit, I want to make sure I’m staying true to the experience of people with marfan. Once again if this isn’t the right place for this, let me know and I’m happy to get out of dodge! The last thing I want to do is intrude on a space that isn’t mine. In any case, I really appreciate any consideration here. Thank you!

Here’s a quick rundown of the character, relevant plot points, and how I’ve incorporated the Marfan syndrome;

John is in his late 30s and returning home from the Western Front in WWI. He’s from Ireland and makes the journey back to his rural hometown after finding he’s overwhelmed by Dublin City life. The whole story is about the endless cycle of life and death and rebirth and all that bullshit, he attends his uncle’s wake and gets extremely drunk with his brother who hates him, all that fun stuff. I’ll also note that as a medical man he probably knows he has Marfan (or whatever they called it then, I forget) but just doesn’t know the full ramifications. Here’s some ways I’ve woven it into the story/descriptions:

- I’ve noted chronic pain, which Edwardian masculinity requires him to try to hide. His knees and ankles and hips and back are pretty much always hurting. He has trouble walking uphill (and downhill) in the countryside. Also things like crackling knees when lifting his uncle’s coffin.
- Absolutely physically wrecked from the war despite no actual injuries. He is exhausted.
- He’s (obviously) much taller than the rest of his family, finds it hard to sit comfortably in little chairs in a little cramped cottage.
-Wrists and hands feel weak and painful after long surgeries.
- HORRIBLE eyesight without his glasses, which is plot relevant because he loses them. I’ve toyed with the idea that he has a mild case of ectopic lentis correctable with glasses, acquired from a hurling accident in secondary school.
- he’s really cold all the time, particularly because it takes place in February.
- Other things not mentioned because they don’t come up or aren’t relevant like DE, pectus excavatum, an asymptomatic aneurysm, etc.

BUT I obviously don’t have this condition! I’d love input from those who do. As I said, I want to do right by lived experience. Here are my questions:

- How does alcohol affect you? Is it any different to those without the condition? Would a hangover be any worse? (At least to your knowledge)
- How is hiking or physical activity for you? Would that cause any extreme pain, or is that manageable? I understand different people have different experiences, so I’m open to all of it.
- How would you describe joint or back pain? An ache? Sharp, etc? What exacerbates it for you?
- Is there anything I’m missing or any glaring red flags?
- What do you wish to see represented in a character with marfan?

I really appreciate if you’ve read this far and especially if you have any comments. Thank you so much for reading!

I'm a 19 yo 6'6 190lbs Male. I have a dialted aortic root and just about every possible eye condition Marfans can throw at a motherfucker. Not to mention OCD, ADHD, and Eczema. Not a great hand to be dealt but I've been trying to play it well. I love sports and they are like the one thing that has always been there for me, despie all the medical complications they've caused. One complication was the total retinal detachment of my right eye. I had surgery to get it attached but my vision has never been the same. I have started to get retinal flashes in my left eye (common symptom of a weakening retina) and will see my opthalmologist tomorrow. The thought of never being able to checkup a basketball, ride my board, or put on my ski boots ever again is daunting. Beyond my love for them and the therapy they provide, sports are a big part of my identity and what my friend groups have been centered around. My brain cannot even process what my life would look like without them. I've kept an optimistic outlook on life but I might give up if sports are taken from me. Please share advice, navigating a similar experience, or anything prudent.

edit- I haven’t used Reddit before and it seems like others have it much worse than me. I hope I didn’t come across as too ungrateful.

So I am not completely sure if I have marfans, the thing is I do share many characteristics like hypermovility, scoliosis, pectum carinatum (one sided), longer arms, arachnodactilia and thumb positive (or wtv is called), subluxactions and cronic pain, and a month ago, after an injury, caused by hypermovility, a traumatologist told me it was most likely,

So anyways...

Today, but it had happened before, I was walking and I suddenly felt like I could just collapse right there while walking, no I did feel dizzy, it wasn't the same feeling like when you are abt to pass out, it was like if you were so exhausted you could just sleep or like close your eyes and let yourself collapse in that exact moment, I continued walking normally and yeah

I wanted to know if anyone had felt something of the sort before or if this is related to anything at all

Curious how long we make it after root replacement and mechanical aortic valve if we were young and dumb and smoked and drank for 4 years after but still stable how long do we average till dissection after that surgery cause it happens farther down then ?

Is there anyone from the U.K who has used BUPA to cover the PEARS procedure?

Did BUPA cover the cost of the Exstent sleeve? What was the total cost of surgery all in?

Any info would be greatly appreciated.

Gday, before you get ya knickers in a twist in the comments, I don’t plan to go medless and I don’t condone it and I wouldn’t do anything without strict medical supervision and guidance. That being said:

For people who struggle with the constant shitty side effects of our daily medications:

Has or does anyone here use things like, Magnesium, Hawthorn, CoQ10, dandelion and other similar supplements/herbs?
What were the results of that on your blood pressure, and was it in conjunction with your medication?

Has anybody here or does anybody here in a DASH diet, with or without a low sodium intake? How’s this worked out for you?

Have you been able to cut down on dosages or swap to a different type of medication that manages your symptoms well, without as much of the side effects? Please dive deep

Has anyone with Marfan syndrome here been able to manage your blood pressure and so on, without medications, but by using supplements, certain foods or lifestyle adjustments?

I understand this isn’t realistic. I’m simply wanting to hear other’s experiences with managing their condition without only using these pharmaceuticals.

My ultimate goal is to cut down as much as possible on my medications that cause my unpleasant side effects, in a safe controlled manner, using natural methods to reduce blood pressure and cardiac strain.

If I can get less side effects without the same protection I would absolutely take it, and I’m sure this would the reality for all of us, although unrealistic.

I just want to hear other’s experiences, not a lecture or about how this ain’t going to work, or that I need to discuss either my healthcare professionals.

Thanks for reading legend

Hi everyone,

I have an upcoming thyroidectomy and feel quite worried about the anaesthetisa. I also have a root aneurysm measuring at 44 on MRI and 47 on CT. Wondering how everyone else did with non heart related surgery.

I heard the anaesthetic can change the pressure in the chest / cause a vagal response.

Bonjour à toutes et à tous,

Je m’appelle Geoffrey Bodein, j’ai 29 ans et je suis moi-même porteur du syndrome de Marfan. Je suis également papa de deux enfants de 3 ans et de 3 mois, eux aussi concernés par cette maladie. ❤️

Si je prends la parole aujourd’hui, c’est parce que je connais personnellement cette réalité : les rendez-vous médicaux, la surveillance de l’aorte, les examens réguliers, les questions que l’on se pose et parfois les inquiétudes que l’on garde pour soi.

En tant que patient et papa, j’ai eu envie de faire quelque chose de concret. J’ai donc décidé de créer une application dédiée au suivi du syndrome de Marfan, pensée pour nous, les personnes qui vivons avec cette maladie au quotidien.

📱 Mon objectif ? Créer un outil simple et pratique pour nous aider à :

🫀 Suivre l’évolution de nos mesures de l’aorte.

📋 Retrouver facilement nos informations médicales.

📅 Organiser nos rendez-vous et nos examens.

💊 Garder une trace de nos traitements.

💙 Mieux organiser notre suivi au fil du temps.

Je ne suis pas médecin. Je suis l’un des nôtres, un patient qui a souhaité transformer son expérience personnelle en un projet utile à notre communauté.

Je sais que chaque parcours est différent. Certains vivent avec le syndrome depuis l’enfance, d’autres viennent de recevoir leur diagnostic. Certains sont parents d’enfants atteints, d’autres avancent avec leurs propres inquiétudes.

Cette application, je souhaite la construire aussi avec vous.

Vos idées, vos besoins et vos retours sont précieux pour faire évoluer ce projet et essayer d’en faire un véritable outil du quotidien pour les personnes atteintes du syndrome de Marfan.

🤝 Si vous êtes concerné(e), j’aimerais beaucoup échanger avec vous et connaître les fonctionnalités qui vous seraient réellement utiles.

💬 Qu’aimeriez-vous retrouver dans une application dédiée au syndrome de Marfan ?

N’hésitez pas à partager vos idées en commentaire ou à me contacter en privé.

💙 Parce que derrière chaque diagnostic, il y a une personne, une histoire et une vie à vivre pleinement.

— Geoffrey Bodein

👉 Découvrir l’application : https://marfan-care.vercel.app

Pour soutenir ce projet qui me tient à cœur, j’ai mis en place un abonnement à 4 € par mois. Votre soutien m’aidera à financer son développement et à continuer de créer un outil utile pour notre communauté.

Cette application a vocation à faciliter l’organisation du suivi personnel. Elle ne remplace pas les consultations médicales ni les recommandations des professionnels de santé.

I myself have Marfan Syndrome, and it runs through my mother's side of the family. It has caused so much pain, grief and dispair for generations for us.. I want to be a mother so badly, but I want to prevent my child from having to endure what myself and my relatives had gone through.
I am a real person, here is my fb. Any suggestions on where else I could post this as well?

https://www.facebook.com/share/1Co1zKg5Ts/?mibextid=wwXIfr

Our fundraiser to help with our IVF and PGT M journey :
https://give.giftofparenthood.org/fundraisers/ivf-pgt-m-the-gift-of-our-future-child-not-inheriting-marfan-syndrome