I was diagnosed with a rare lung disease that almost exclusively affects women at the Cleveland Clinic a few years ago and about an hour or so after the crash course on lymphangioleomypmatosis (LAM), the specialist told me about a closed support group on Facebook. I could hardly process the epidemiology of this disease; connecting... Continue Reading →
5. How I combat anxiety from living with a rare lung disease
With my history of lung collapses due to a rare lung disease, LAM, I now have a very real fear of another collapse, especially when flying. Cognitive reasoning tells me that the chances of a collapse are very low now that I have most of the surface area of my lungs firmly attached to my... Continue Reading →
3. Here’s what NOT coping looks like
My left lung collapsed twice a couple of years ago over a course of a month. One Friday morning, I was at a hot yoga class holding pose #2, and I felt a stabbing sensation on my upper left back region, followed by an increased shortness of breath. I’ve had previous lung collapses on the... Continue Reading →
2. Why it’s hard to share your story with illness
I discovered pretty quickly that I wasn’t equipped to handle the reaction I received after sharing my diagnosis of LAM with a few people. I was still processing the news myself and didn’t really have time to decide who to share my diagnosis with and how much detail to provide. I’ll never forget the look of horror... Continue Reading →
1. The day I was diagnosed with a rare lung disease
Here's my story about what happened when I was diagnosed with lymphangioleiomyomatosis (LAM, a very rare lung disease).