These days if they make sure that they get regular checkups the symptoms can be managed very well and the prognosis and outlook is much more positive than it used to be. Of course there will be things that she can't do but in most respects your friends DD should be able to live a relatively normal life provided she has that regular management.
My uncle has very severe Marfans syndrome. When he was born my grandmother was told to not expect that he would live for very long as the curvature of his spine was so severe that it significantly limits his lung capacity. He has had a very tough time, it would seem both from the physical complications and the social and emotional ones.
He has always looked different (hunched back, long face, fingers and feet, very thin) and because of this has been judged and rejected by many. Those who know him though, know him to be an incredibly intelligent, gentle, thoughtful, wise man - probably made wiser by the adversity he has faced. He was single for much of his life but fell in love at age 45 with a woman who loved all of him, body and mind and who was the most incredible support, advocate and inspiration for him.
He has always had heart trouble and significant pain from the skeletal issues but I think what has caused him the greatest trouble is the curve of his spine (an issue which I understand could have been far more radically addressed by today's medical advances). He has a quarter of our usual lung capacity and struggles to breathe at the best of times. He speaks slowly and quietly, gasping between each sentence which I would think would be extremely frustrating but as a consequence of this being 'forced' on him, everything he says is very well thought out and reasoned. No frivolous speech. Just careful, measured good sense (and wicked good humor!). When he gets a cold, he frequently ends up with pneumonia. He has been so sick that on several occasions doctors said that he might die and on one occasion about 15 yrs ago, we were all told to say goodbye. I don't know how he does it, but each time he pulls through.
I'm telling you this, not to scare you but to let you know that even in someone with a very severe case of Marfans they can live full and fruitful lives against all odds. My uncle is about to turn 60 and he is thriving. He flies airplanes as a hobby and has had a successful career as an aeronautical engineer. A better soul and a wiser man you could not hope to meet. I totally understand why your friends are shocked and fearful for their daughter - this is understandably a lot to take in. Just thought I might share the story of one who has lived with it and done more than just survive.
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