Shortness of breath, chest pain, a cough and chest pressure. This all tends to be worse around your period but you can have symptoms all the time. From what I’ve heard and read it can be quite hard to diagnose. Hope this helps 💛

I know only one person who has it. It's very bad. She gets surgeries for her lungs about 4x a year and they are long hospital recoveries. I'd be happy to give you her info if you feel like you need some more advice from someone who lives with it. Let me know. 💛

According to my pulmonologist, we can be short of breath, pain, pneumothorax. It ahould show up on a chest CT with contrast. He suspects I may have it but it's causing me no symptoms. I'm trying to think of any other symptoms.

I believe it's on my diaphragm but not sure. Searing pains under my rib cage on my diaphragm.

How is everyone??