Hypermobility Basics

Marfan Conference 2016

Last weekend the Marfan Foundation‘s Marfan Conference was held at Mayo Clinic, and I’m really happy to say that I managed to get to it!  I just wanted to share a bit of my experience, for anyone who is interested in going next year.

  1.  The Marfan Conference is mainly about the connective tissue disorder (CTD)* called Marfans, but it is open to anyone with any kind of CTD.  While there were a lot of talks about the heart problems that people with Marfans and related disorders can have, there were also a lot of sessions on things like joint problems and applying for disability, that apply to anyone with a CTD.  (I actually don’t have Marfans, but I do have a related disorder).
  2.  While a lot of the info in the talks can probably be found online, it is much faster to get it right from the talks, and you know it is authoritative when the talk is being given by a doctor or geneticist.  Also, they had time for questions at the end of every talk, so it’s a great way to ask about CTD problems your average doctor doesn’t have experience with.
  3. It is reassuring to see doctors who care, and validating to meet people who have a similar illness and have similar struggles.  Almost everyone has seen lots of doctors who have had very negative reactions to their CTD, and even told them they were crazy.  For me, knowing that there are actually good doctors out there, and that some of them are researching solutions to our problems, makes it easier to keep a balanced view of the medical profession.  This makes it easier to get up the courage to go to the doctor the next time I really need to.
  4. If you struggle with notetaking, attend the conference with someone who is interested and willing to take notes, or plan to take pictures of the PowerPoint slides. Or do both.  There is a lot of useful information packed into the sessions, and you don’t want to forget it.  They do NOT allow audio recording in place of notetaking, and they don’t make and sell an audio recording of the sessions either.
  5. Meeting someone with a CTD in person for once is indescribably awesome.  I was really happy that I went to the young adult luncheon even though I tend to get dizzy when I talk to people because I met a girl my age who also had similar geeky interests. It was great to be able to talk about CTD things with someone in person, and get advice about surviving college.

Despite the fact that leaving the house is exhausting, I’m really glad that I went!

Have you attended any kind of CTD conference lately?  I’d love to hear about your experiences in the comments!

 

*Note:  I don’t know if CTD is an official abbreviation for connective tissue disorder, but for now it will do.

Advertisements

5 thoughts on “Marfan Conference 2016

  1. Your experience going to the Marfan Conference for the first time seems like it was very similar to mine when I went as a teenager. I felt so elated and refreshed after coming home afterward because of how wonderful it felt to finally meet other people who had the same disorder.

    And it felt like such an enormous relief to finally be examined by doctors who were experts in CTDs and who knew all about my surgeries, complications and health issues (and who didn’t think I was crazy, as many of the doctors before I got properly diagnosed did).

    I’m hoping to maybe save up enough this year to finally get to go in 2017 for the second time if my health is doing a little better. I would love to experience it again and think it would be interesting to do so now that I can attend the adult functions.

    I’m glad that you had a good time! 🙂

    Liked by 1 person

  2. Thank you! I’m glad you enjoyed your first conference! 🙂 I also think it would be interesting to see after a few years how much the research has progressed. Some of the stuff Dr. Hal Dietz had to say about his research was really exciting, and I wish there was a way to keep up with Marfan research in between conferences since it’s too hard to get to the conference every year.

    Like

    1. Thank you! 🙂 Yeah, sometimes we say hypermobility instead of connective tissue disorder, but that’s confusing because sometimes healthy people have hypermobile joints too.

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s