My Story | Living with Marfan syndrome
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- เผยแพร่เมื่อ 28 ก.ย. 2024
- Marfan syndrome is a genetic connective tissue disorder that mainly affects the heart, eyes and skeletal system. Its prevalence ranges from one in 5,000 to one in 10,000. It is a hereditary disease, which affects the fibres that support the bones, muscles, organs and other tissues in our body.
Dr Douglas Richter, a cardiologist at Cooper University Health Care in New Jersey tells us what it is like to live with Marfan syndrome.
Editing: Shiva Kumar
Produced by: Akhila C Damodaran and Revathi Rajeevan
#marfansyndrome #geneticdisorder #connectivetissue
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Just few a days ago i lost my husband in hongkong he had marfan syndrome
He is just 45
And my daughter just 14 year old she have marfan syndrome too i i worry about my daughter cause i dont want to loss again in my life 😢😢
I too have marfan syndrome and I got scared whenever I hear about the consequences and I am in my 20s right now what should I do for this mental distress?
We think our son may have Marfan syndrome he’s 17 years old . Where do we start for testing. He has a concave chest and has the long limbs, but still reasonably within proportion but he has scoliosis and lots of stretch marks all up and down his back. He’s about 510, so not too tall but he has eye problems but nobody’s ever said that there was anything different than just the fact he needed glasses, but we want to go and make sure and test for this especially because of his chest.
We suggest you speak to your physician about this. Only a qualified medical professional can make the diagnosis.
I have marfans. For the first 38 years i race go raceed karts and rode mountain and bikes. Man it has been not so good since 2010.
Thank you for your testimony and hope for us unprepared parents.❤
I have marfan syndrome too and i had to went through bentall surgery
Thank you so much for this encouraging video, I suspect my son has this condition, will see his doctor for diagnosis.