Marfan Syndrome - What is it/My story 

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. :)

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 ❤️ 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.

Hi Sera, I see this comment is from several months ago. Have you seen a Dr re your concerns?

Hey! Love you too :D

Thank you so much! :)

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 :)

Commentah Marfan sufferers usually take ACE's and ARB's like losartan.. And sometimes betablockers

Morgan Carey stfu

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