Marfan syndrome (MS) is a connective tissue disorder that affects thousands of 
adolescents [Population Reference Bureau, 2013]. Some adolescent patients with 
MS may use social media to express their experiences and emotions, but little is 
known about what patients choose to share online. To investigate social media 
content related to Marfan syndrome we used search terms "Marfan syndrome" and 
"Marfans" on six different social media sites. The top five recent and popular 
posts for each site were collected and coded weekly for five weeks. Posts were 
excluded if they were reshared content or not in English. A codebook was 
developed using an iterative process to categorize posts and comments. Out of 
300 posts collected 147 posts (49.0%) were included for evaluation. Categories 
of displayed content included personal pictures, memes and pictures featuring 
symptoms of MS (41.5%) and personal MS experiences (27.1% of posts). One quarter 
of the posts specifically mentioned a positive experience or how thankful the 
profile owner was for their life. A unique category of posts (13.7%) referenced 
Austin Carlile, a celebrity singer with MS, as a role model. Physicians and 
healthcare providers may consider using social media to understand common MS 
concerns and to place future health education materials.