Musings of a Marfan Mom

NMF Connect

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Today is a day for a short post. It’s one AM and I’m just sitting down to write after indulging in too many (excellent) conversations on Facebook and Twitter.

I wanted to just take a minute to make sure people are aware of the social networking site NMF Connect. I know some of my readers have found their way here before other NMF resources.

A little over a year ago, the National Marfan Foundation launched an interactive site for patients, their families, and even providers to use as a means to connect and share information. It’s something that some of us had been begging for since, uh, we were teenagers ourselves.

NMF Connect operates a little like Facebook. You can create a profile and join groups for people of related interests. However, there’s also a main forum for general questions, a place to host your own blog, and a group chat window (as opposed to some sites that allow only 1:1 chatting).

I absolutely love it! If I have a very specific medical question of course I still contact my doctor or the NMF’s nurse, Amy Kaplan, but NMF Connect has been ideal for those kinds of questions that doctors really can’t answer. I started a group for women who are parents or are contemplating pregnancy to be able to discuss their options, and another for patients of dural ectasia to share how they handle the pain. Other groups include regional sites, a group for parents who have lost a child to Marfan, one for international patients, and several for related disorders. There are over 70!

This has been a way for me to connect with fellow Marfs from all over the world. I’ve gained insights I wouldn’t have otherwise. The site has also been a really great way to bring the teenagers together in a way they haven’t been before. I’ve seen it provide them with an emotional outlet, as well as leadership opportunities as they share their stories with others.

If you, a loved one, or even a patient has Marfan or a related disorder, I recommend that you check it out!

* I was not asked to write this post or in any way compensated for it. I just really like the website.

And, please don’t forget to enter the Etsy purse giveaway!

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2 Comments

  1. I have come to know about the NMF throuugh google n was very excited to learn so much about marfan S. I got answers to my many questions n ailments etc. However, there r so many others like myself who r experiencing other side effects like pains that r not addressed. Pain that r not only connected to DE. Most doctors tools r @ NMF website. They need the tools to help us as they most time don’t associate the pains to marfan. Then that part of our condition is ignored.

    [Reply]

    marfmom Reply:

    pain is definitely an issue we face! the marfan foundation (they just changed their name from the NMF and have a new website coming out in a few weeks!) has started a quality of life task force to address pain, and several other issues. i’m optimistic that that will provide some answers for us! :-)

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