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Twenty Years 26 Aug 2013 | 04:26 pm
Twenty years ago this month, I was diagnosed with Marfan syndrome. I was 8 years old and I am amazed at everything that has changed since then. When I was diagnosed: - We were still being told the ave...
Friday Favorites 23 Aug 2013 | 09:54 pm
Sorry this is late today! Had a late night last night and M had an early morning outpatient procedure at the hospital today and I completely forgot to preschedule the post! It’s Friday, which means it...
Trichotillomania 20 Aug 2013 | 09:45 am
Last week, J was diagnosed with trichotillomania. I know…another diagnosis. Abbey, when I was talking about it with the doctor, I could hear you in my head saying “I always say your family should be o...
Friday Favorites 16 Aug 2013 | 05:00 pm
It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’l...
New Aortic Disease Study Seeking Participants 15 Aug 2013 | 06:00 pm
I wasn’t around for the plenary session at conference – where various doctors present their latest research – because I was with the teens, but I did hear about this study by Dr. Lynn Sakai. My unders...
2013 Marfan Foundation Conference Photos 14 Aug 2013 | 06:16 pm
A little visual recap of this year’s conference The post 2013 Marfan Foundation Conference Photos appeared first on Musings of a Marfan Mom.
Josh’s Conference Speech 12 Aug 2013 | 12:00 pm
For those of you who haven’t attended a Marfan Foundation conference before, at the closing luncheon there is always the “Living Successfully Panel,” a group of 3-4 people who talk about their experie...
Friday Favorites 9 Aug 2013 | 05:00 pm
It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’l...
Marfan Foot Fusion Surgery 8 Aug 2013 | 01:04 pm
Today’s guest post is by my friend Georgia. She is sharing her experience with multiple foot surgeries. Thanks, Georgia! Growing up the most obvious outward sign that I had Marfans was my foot. My rig...
The National Marfan Foundation Becomes The Marfan Foundation 7 Aug 2013 | 12:45 am
As most of you in the Marfan syndrome and related disorders community probably know by now, during our annual conference last weekend our foundation (formerly the National Marfan Foundation) unveiled ...
