Marfan Syndrome - What is it/My story
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- Опубліковано 20 сер 2024
- Still working away on fashion content, but I thought it would be good to explain something that's been quite significant in my life at the moment. I'm going to be away for a little while, but things should return to normal very soon! :)
Oh! and it's also Marfan Awareness Month~
www.marfan.org...
Blog/Research: www.fashionlac...
Instagram: / brittzays
/ brittzays
Hi there! I have Marfan, too.. dissected at 44, (at 4.4 aortic measurement!) and went into surgery and now I’m 57! I have had over 10 eye surgeries, but I can still see! Yay! Life is a huge gift!
Unfortunately, my son had it and he passed at age 27. It’s so nice to meet you!
I am so sorry for your loss! Unfortunately marfan is hard with the male gender!
Hey hunni, I have seen Your comments pop up here and there as I have been cruising around these sights for Marfan's awareness month. I am so sorry to hear You lost Your Son. I have Marfan's so do My siblings and 2-3 off my kids, My Son turns 21 this month. I had valve sparing surgery at 4.7 but had a type B a month later which I still have. My Dad lost his fight with Marfan's 6 years ago at 59 I miss him every day. Where do You live? I am in Sydney Australia.
Hi! Excellent video, congrats! My daughter has Marfan Syndrome, she's a sporadic mutation, so she's the first one in our family with it, she's 10. I'm so going to show her this awesome video I'm sure it would answer a lot of questions she might have about her future. You're a great example to follow. Thank you!! 👏🏻👏🏻👏🏻❤
Happy to hear that this video helped, thank you! I'm happy to talk about Marfans and answer any questions if needed, hope you have a wonderful day. :)
Glad to see another Marfan UA-camr. Thanks for sharing your story to get awareness out there. 👍👍👍 It is the same as I do on my channel but I teach regardless of any circumstance anything is possible and the greatest gift is love. God bless you!
I have a marfan syndrome too and it sucks because I can't wear pretty dresses and shorts because of my stretchmarks and varicose veins 😕
I'm 14 and I have this, I'm over 6 ft and get bullied a lot- believe me I've heard it all
Thakyou so much for this video! it is awesome to see others with this doing so well and being so positive. ive known about the condition my whole life as me and my mum, uncle and cousin all have it too. like you i also had a double curve scoliosis, i had mine operated on when i was 15. Its great to see some positivity surrounding it since most information or or videos seem so drawn to the doom and gloom.
i hope you are well and i send best wishes xx
Aw, thank you for the lovely comment! Yes definitely, it's undeniable that there are difficulties about having Marfans and it’s easy to focus on that, but having limits shouldn't be a reason to feel ashamed or stop looking forward.
Instead by finding more creative alternatives to get somewhere, having a struggle and doing things differently can open up so many more opportunities and positive insights. That isn't as easy, but I think it's a more fulfilling route to take :)
So proud of you. You've come so far! Keep up the great work.
Thank you so much! :)
I have Marfans and it's affecting my hips but I'm not coping. It has stopped me from working and I'm trying to work out ways to move forward. Tracey
Hey there! Love this video!! I also have Marfan's and it honestly sucks! I have lots of stretch marks
very strong positive person you are.
Thanks for such video.
Regards,
I have Marfan Syndrome too. It's 'complicated'. 🤗
Hey Britt, i dont have Marfan, but i have Loeys dietz syndrome...they call it Marfan type 2 sometimes, so i feel ya. Im 27, and from Norway, i think we are about 130/140 People in Norway with this syndrome, and almost 100 of them are in ny family 😱
I have marfans.i have had a dissection and four aortic surgerys. Does any of you folks suffer from fatigue?
beautiful ♥
I live in namibia i am having marfen an its staff but God is all tht mtter
Hi, my fourteen year old son as been diagnosed with Marfan , any information you give me will be a great help.thank you.
Thank you god bless you .. 🌺
I have the same condition, but my dad had the disease but only found out after I was born and I have two sisters that don't have the condition. We have like the complete opposite circumstances then each other 😂😂
I am a 27-year-old father to a 4-year-old daughter and soon-to-be newborn. I'm staring down the barrel of a Marfan's Syndrome diagnosis and am terrified. My children deserve a father and I'm concerned this might get in the way. Furthermore, I started college late and have yet to really have a career. I'm still sort of processing the situation, and I'm not sure where to go from here.
Hi ❤️ My experience with marfans is quite different, nor do I have children, so my thoughts might not help much - since my mother was diagnosed when I was very young, I was too young to comprehend how it affected my family at the time. But children find their own way of understanding complex concepts, since then it’s always been incredibly normal to us. There’s differences in how we live our lives compared to other families, but it also strengthened our love and helped me better comprehend difficult situations which I find other people struggle with more while growing up and as an adult.
If there’s anything I can suggest is to be open and normalise the discussion within your family if it is diagnosed. It will take time, but it doesn’t have to be scary or a barrier, just something to keep monitored as you keep going through life. I’m starting a masters degree this year, nothing’s stopping me from finding my place, I hope the same for you too
I would recommend reaching out to some Marfan communities on Facebook or other channels, often parents are in there in similar situations who may be able to offer advice
It depends where in the world you are (medical costs & availability). Marphans affects each person differently. It also depends if you have other underlying conditions. It can vary from mild to severe. The main thing you have to do is to monitor you aorta. Your physician should prescribe some blood thinner. The medical fraternity has come a long way so you should be able to live a normal life based on your symptoms. Reach out if you need to know more. I've learned quite a bit about it because there was not much information out there when I was younger lol and no Internet.
People with MarfAn that did not have their heart and chest checked out, can pass away early. I will be 70 next week and have an aorta aneurism that is 1mm My Cardiologist will be checking me every six months with MRIs and sonograms. As long as you’re under the care of great doctors, you can live to be the same age as people with out MarfAn.
You had too much surgery. My family can't afford surgeries so I just try to live as normal as I can ☹
i have scoliosis and my arm span is 4 inches longer than my height (5ft1) long fingers and yeah thats it im really scared im might get this syndrome. I have no family histroy of this conditon
Hi i think i have marfan syndrome, I have flexible joints, very long fingers, big feet, short torso, long legs and the roof of my mouth is very raised. How can i find out if i have marfans syndrome?
Hi Sera, I see this comment is from several months ago. Have you seen a Dr re your concerns?
How tall are you? What is your shoesize? Does it affect the feet too?
Hej 😊.
Livet är inte svårare än man gör det.
Jag vet smärta man har och även allt annat😊👍
Hi! Do you take some kind of medication for your heart? Could you write the names of these drugs if so. Thank you!
Commentah Marfan sufferers usually take ACE's and ARB's like losartan.. And sometimes betablockers
I'm sd.deniz.i and I love you !! :)
Hey! Love you too :D
Your mum and my mum are good friends 😊
you hands look huge! can you plam a basketball?
Morgan Carey stfu
Basketballs, the skulls of our enemies