Have you seen this?
A few years ago, while writing stories for a healthcare company, I found myself in conversation with Becca Weust, a young woman who had been diagnosed with Marfan syndrome as a child. Becca had faced many complications—heart surgery and brutalizing headaches, a collapsing sternum and deepest exhaustion—and she described them to me, for that was the purpose of my call. But Becca was so intelligent, funny, interesting, and warm, that I did not wish for our conversation to end.
When you're living with a condition like Marfan syndrome, it's easy to fall into the thinking that pain is just something you have to live with.
On top of everything that comes with having Marfan syndrome, navigating through additional medical issues can seem overwhelming at times. It’s easy to give up and accept that nothing will get better and that the pain is just part of living with Marfan syndrome. I was there myself recently, after struggling with ongoing stomach problems - unrelated to Marfan - for two long years.