Being your own advocate and trusting your instincts is so important when you have a rare, chronic disease like lymphangioleiomyomatosis (LAM). It can get you the care you need and even save your life. Before I had a diagnosis, I kept going to see doctors and even changed doctors when I didn’t feel one was treating me properly. It took 1 1/2 years for me to get a diagnosis, but it would have taken longer had I not been persistent in seeking answers. At the point at which I was diagnosed, I was in a steep decline, so any additional time waiting would have been detrimental to my health.
I’ve always been impressed by how women in the LAM community fight for themselves and each other. Here are two of their stories.
I went to hospitals three times over the years with severe chest pains, and each time they did EKG, EEG and listened to my lungs, which sounded healthy and great! Therefore, my symptoms were ignored and it made me lose confidence in my judgment that something was very wrong. An emergency room doctor made me feel like some kind of “attention whore” a year ago, when they said my chest pains were imaginary. They said to go home and get some sleep.
I was made aware of LAM less than a year ago, when I had a CT for an unrelated surgery. An alert technician noticed “cellular changes of a basilar predominance” in the lower half of my lungs, “raising the possibility of LAM.” The surgeon listened to my lungs (as always) and since I don’t smoke, he said I should not be concerned. He scheduled a dedicated CT of the lungs when I insisted on it. That scan confirmed the cellular changes, and the report said “in the absence of risk factors, no follow up is necessary.” Well, I read up on LAM and recognized many ongoing symptoms. I was in denial but I attended one day of LAMposium last year. Thank God, because I learned that I needed to “follow up” after all.
When I was 26 I’d just moved 250km from home to a new city. I decided I needed to lose weight and exercise. Three months later I was having dizzy spells at the gym and abdominal pain. I went to the doctor who diagnosed me with possible appendicitis and sent me home with antibiotics. Over the next month I didn’t get any better or worse, saw two more doctors whose different diagnoses changed to constipation, various blockages, possibly gall stones, and ovarian cysts. But my insistence of finding a reason for my pain lead to a pelvic ultrasound where the amazing tech found a tumour between my ovary and appendix. At that stage I had no lung involvement, but 6 months later I had lung cysts. It was frustrating for me was in those three years of limbo I felt very put to the side. I was alone, scared as the doctors weren’t convinced I had LAM, and with no lung involvement, I don’t think they knew how to treat me.
Support women with LAM and help find a cure
Organizations that help women with LAM need your support! Click the below links to donate or learn more about the organizations that have helped the women who participated in this project.
LAM Selbsthilfe Deutschland e.V. (Germany)
Stichting LAM-Nederland (the Netherlands)
LAM Australia Research Alliance (Australia)
For information about all the global organizations that are a part of the Worldwide LAM Patient Coalition, click here.