Marfan Community Stories from Chicago

Living with Marfan syndrome from three different perspectives.
This video debuted at The Marfan Foundation's HeartWorks Chicago gala, April 22, 2022.
For more information on Marfan syndrome and related conditions, please visit Marfan.org.

[@pilarmontenegro8811]

The cardiovascular surgeon forbade him to travel by plane or visit high altitude places due to the risk of another spontaneous pneumothorax. I would like to know if this has happened to any of you. my son is currently 20 years old, the diagnosis was at 18 years old

[@carolanngoodell3564]

I had two pneumothracies in 2005. Both after nothing strenuous. One I was actually standing at a desk in a hotel lobby, the other i was at my job at Mcdonalds. I was 16

[@pilarmontenegro8811]

My son has been diagnosed with probable Marfan syndrome. it only has a few criteria, such as arachnodactyly, spontaneous pneumothorax, hyperelasticity. So far he has no alteration of the aorta or alteration of the lens.

[@user-vm4it9st1f]

my sister also has this syndrome

[@donnarivas6150]

my whole family had Marfen Syndrome.

[@ALANAMUL]

I am a marfan syndrome patient too

[@MH-hw4uh]

Me too

[@rohansrivastava492]

@@MH-hw4uh me 3

[@MH-hw4uh]

Me also 😢 and many family members .