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- เผยแพร่เมื่อ 6 ส.ค. 2018
- James takes over 105 pills a week, but these pills aren't for fun, they're to keep him ticking. Take a look as James shows us how living with Marfan Syndrome takes weekly prep to the next level.
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Thank you very much for sharing your experience. You are very brave and inspired 👍🌺
My brother also has marfans, and dad too. Brother has had a-fib and severe chest discomfort since his late 20s but he has been doing well. I have more of the joint manifestations so far.
You are amazing xx
Wow I feel for you, you poor thing--that's a whole lot of cardiac medications!!! scary stuff. I hope you remain stable for an indefinite period of time and the drugs continue working well for you!!!
I take a couple of the same medications that he takes. I don't have Marfan syndrome but I have some other stuff going on.
You're amazing, I have a brother, which probably has the Marfan syndrom, but we are at the beginning of testing. Which genetic lab confirmed your the syndrome? Thank you very much in advance.
Hi, how old is your brother? The easiest way to check is an arched palet, narrowed breathing ways, flat feet, astigmatism, deviated septum, pigeon test. etc. If you need more information let me know.
@@louvendran7273 means you should get tested. You could just be marfanoid in stature without the actual heart problems. Maybe it’s fine but just maybe the heart will kinda explode at a young age. Also there’s other connective tissues disorders that can present similarly to marfans and so a doctor really should be seen to confirm anything. The layman is usually not as knowledgeable as the doctors.
I've had people say "YOU HAVE SO MANY PILLS!" for over 10 years. Yep. Since the lockdown I just keep them in a big tin and a list of how many, and my husband writes A, O, Le on the top to help me. SO MANY PILLS. Also going to the dentist, "So any new medications...?" Well yes this is a NEW ONE. (they never seem to take any away!). Thanks for your great attitude!
and by the way, I have marfans too, and an even rarer genetic condition as well that I won't mention. it sucks. only age 39, but it is what it is.
what are you only 39 years old now?
Do you have eds
Stay strong my brother. When they first got into me they didn't know what they were doing. It was not taught in medical school in the 40s and 50s. I went in for my first operation in 1983. I've lost count
It was only realised by a younger doctor in 1999. I've been lucky because I've been supported well by the medical fraternity. I had my aorta replacement in 2020 during lockdown and doing okay. Just the pain, the cramping, the stiffness is a problem, plus not being able to bend. All the best from Auckland. Anybody need any advice I'm always available and will answer your questions. My case is nuanced as a I psoriatic arthritis as well which is awful. I can even do videos for support. Let me
Just getting heart tested 43 at the moment still for heds Asperger's add positive hand tests
Can I get in contact with you please? I’m 27 and just recently diagnosed
@@The_plug_for_everything Yea, no problem. Best wishes
@@louvendran7273 can I get an email or something? I’m kinda lost here, this is something very few people get to understand so it can be scary and extremely lonely. I’ve always been worried why my physique looked strange growing up but nobody seems to know what was going on. Only found out about it recently at 27
Hello sir i just diagnosed marfans disease i want your help
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