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dusti
@dusti

Posts: 3
Joined: Mar 15, 2016

Anyone with Marfans Syndrome?

Posted by @dusti, Mar 15, 2016

Anyone with Marfans Syndrome on this thread please? I am looking for support groups & about to lose my mind! I am the primary care giver to a young gentleman who lives in my home who has several disabilities & I cannot get help from anyone, it seems like every place I go I get the door slammed in my face. Plz help !

REPLY

Hi @dusti – Have you checked out The Marfan Foundation’s website? They have resources and links to support groups: https://www.marfan.org/secure/community-support

Hi @dusti, and welcome to Connect. I’m Alyse, and I’m one of the community moderators here. I’m sorry to hear about what you’ve been going through and can only image how frustrating it can be. While I’m not a medically trained professional, I am here to help connect you with others who might be facing similar situations.

Thanks @caretothepeople for sharing information about local support groups. I’d also like to introduce you to @ebam and @lipettit, who have experienced similar journeys.

How has it been at home this week? Do you have family or friends who provide support?

Thank you very much, but saying you’re sorry doesnt help the matter at hand. I sent my congressman an e-mail and i’m certain it will be placed on the back burner i just am overwhelmed. This has beeon going on for several years and nothing is being done and nobody cares enough to help. smh…

Hi @dusti – I imagine how frustrating it has been, and I hope that you’re able to find support through Connect and The Marfan Foundation. I was able to find some information online about self management, which also gives guidance for providing emotional and practical support (http://www.mayoclinic.org/diseases-conditions/marfan-syndrome/manage/ptc-20195535).

I’d also follow @caretothepeople‘s recommendation and visit The Marfan Foundation website. There are a few things you can do that may help you find support, including:
– Join the online community: It’s an online community that provides an engaging way for people living with Marfan syndrome, or who care for those with Marfan syndrome, to find each other and share experiences.
– Seek out a community event: The community calendar might help you find an event local to you that you could attend to meet others, find support, etc.

I have Marfans, anything I can do? i was diagnosed at the age of 9 Im 34 years old any support i can give or advice I welcome any and all questions and or concerns.

My 12 year old has marfans syndrome and suffers from leg length discrepency, loose joints,low muscle tone and a collapsed ankle. I would like to be in touch with other marfans patients or parents of marfans patients .

Hello @twofeathers8613 and @ebm,

I'd like to welcome you to Connect, and thank you so much for sharing a bit about yourself with the community. I'm tagging @jimmorris900 @lazyironman @jeannedunn, inviting them to join this discussion as they've talked about Marfan Syndrome, and may be able to offer more insights for you.

Here's some information about Marfan, with links to Mayo Clinic's approach in treating patients with Marfan syndrome:
https://www.mayoclinic.org/diseases-conditions/marfan-syndrome/symptoms-causes/syc-20350782

I would sincerely encourage you to view this video Q&A, where Mayo Clinic doctors discuss diagnosis, and treatment options, including optimal timing for thoracic aorta repair:
https://connect.mayoclinic.org/webinar/marfan-syndrome-challenges-in-diagnosing-and-treating/

Since Marfan syndrome is a connective tissue disorder, you might wish to read through the conversations in this Connect discussion:
– MCTD (Mixed Connective Tissue Disease ) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

Thomas, what questions can the Connect community help you with? @ebm, I noticed this is your first post after joining Connect a few years ago – I'm so glad! How has your son/daughter been coping thus far? What concerns you the most?

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