The Marfan Foundation National Conference 2018!!!

It’s finally here! I’ve been at the hotel since Wednesday night and I have made so many new friends already. I am learning so much!!! Turns out I am not the only one where there has been some debate over which connective tissue disorder we have. I found out it is possible to have multiple actually.

I have an FBN1 gene mutation, but my particular gene variant isn’t one my doctors have seen before, so it’s a “gene mutation of unknown significance”. So I was originally diagnosed with Marfan a year and a half ago, but more recently my doctor thinks I show more signs of EDS. So not totally sure, which means I also don’t really know how likely I am to need heart surgery someday. My aorta is fine for now though.

It is really nice getting to meet a bunch of people who totally get all of the fatigue and chronic pain issues because they have it too. I never have to remind any of them that I need to rest periodically throughout the day, or explain that sometimes I get cranky from pain. They all just GET it. It’s amazing! I want to go to the conference every year from now on. Next year it will be in Houston, Texas.

In the morning the actual workshops and such start, so I’m off to bed for now.


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