Lymphangioleiomyomatosis

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 lymphangioleiomyomatosis (LAM), the specialist told me about a closed support group on Facebook. I could hardly process the epidemiology of this disease; connecting on [...]

One of the symptoms of lymphangioleiomyomatosis (LAM), my rare lung disease, is shortness of breath. I discovered just how short of breath I can get when I started walking with my neighbor in the morning. Turns out I could handle the walking just fine, but add a conversation to it, and I sounded like a freight train. Frankly, [...]

I discovered pretty quickly that I wasn’t equipped to handle the reaction I received after sharing my diagnosis of lymphangioleiomyomatosis (LAM) with a few people. I was still processing the news myself about this rare and incurable lung disease and didn’t really have time to decide who to share my diagnosis with and how much detail to [...]

I participated in a study conducted at the National Institute of Health (NIH) a couple of years ago to determine the disease process of lymphangioleiomyomatosis (LAM), and during my stay, I had a chaplain visit me in my room. She was a lovely, middle-aged woman with short hair whose voice was as soothing as her overall [...]

I was unofficially diagnosed with a very rare lung disease, lymphangioleiomyomatosis (LAM) in mid-May a few years ago at a pulmonologist’s office in Atlanta. It all started with a pesky cough that just wouldn’t go away, so I visited my primary care doctor. He wasn’t available that day, but his RN on staff was and she [...]

I went out to lunch with a friend some time ago, and over kale salads and mineral water she asked, “So, how are you doing?” I took that as my invitation to lament when I think she may have been looking for something a little more uplifting. I responded with how isolating it’s been living [...]