Life with LAM Disease – Member, Najah S.

In October 2007, I was sitting in the lecture hall between nursing lectures when it felt like I had taken my last breath. It was a moment I will never forget. It felt like someone had taken a rope and cut off my air supply.

My friends drove me to the hospital, where they told me I had suffered a 60% lung collapse. I was 23 years old, healthy, and highly active. My family and I couldn’t understand why this was happening.

Living with a Diagnosis

The next day, after having a chest tube inserted, I was told that I had an incurable lung disease and would probably not live past 10 years. Devastation, confusion, anger, anxiety, and sadness are just a few words to describe the feelings I experienced that day. A second lung collapse happened in 2010 when I was hurt by a patient on the unit I was working on. This caused me to have three chest tubes and a 2-week hospital stay. The doctors again brought up the name LAM, something I placed in the back of my mind three years prior. They showed my parents the CAT scan, and my lungs were described as looking like cottage cheese. After almost having a partial lobectomy, my lung reinflated, and I went back to living my normal life, having two daughters in 2011 and 2013.

Making It Real

I got connected and went to my first LAM Clinic appointment in NYC in the spring of 2014. I was scheduled for labs and PFTs. Although it was seven years post-diagnosis, this appointment and having these tests done made the diagnosis feel real for the first time.

There was no way to know how much, if any, decline I had since diagnosis or if the pregnancies caused my disease to progress. I was advised that I should consider birth control and not having any more children. However, I procrastinated with the decision and became pregnant and gave birth to my third daughter in 2015.

In 2016, I was advised that I needed to start sirolimus (the only approved treatment for LAM), and in 2017, I was prescribed oxygen for exertion and exercise. The oxygen prescription took a toll on me mentally because I am an avid gym goer, and I couldn’t possibly go from one of the most active members in class to being hooked up to a tank.

I stayed home from the gym for a few months because I felt embarrassed and ashamed of my oxygen tank. Finally, my friend and fitness instructor, Alicia, convinced me to return to the Center. My friend met me in the parking lot of RWJ Carteret, where I had a full-blown panic attack. Eventually, I went into class and did BODYPUMP^™️ and BODYCOMBAT^™️. That was the most vulnerable I’ve ever felt.

Present Day: Strength and Purpose

Fast forward to 2025, and from what I’ve been told, I have become one of the most inspirational members at my Center. I have not let the oxygen keep me from doing what I love: exercising and participating in Group Fitness classes.

You’ll see me doing HIIT, Step, Combat classes, weight lifting, you name it. I rarely take the low options or modifications because I am lucky enough to still have a very high endurance level. Some people still stare, some offer encouraging words, and some ask questions; my favorites are the people who thank me for still being there and pushing them to exercise without me even knowing it.

LAM has taken me through emotions that I never thought I would ever experience and placed me in roles I’ve never imagined, but it has also given me a different perspective on life. I genuinely believe this disease makes me a better nurse and more empathetic to my patients. It makes me more understanding of people living with silent battles.

While there is still no cure for my disease, I continue to do my best to stay healthy for my three daughters. Working out has kept the rest of my lung tissue healthy!

If I can continue inspiring others not to give up, I know my purpose is being fulfilled. I am forever grateful for the support, love, understanding, and prayers I’ve received over the years from family, friends, co-workers, and strangers.

So today, I invite you to celebrate me and all of those living with a disease and still pushing through.

Never let your disability diminish your ability!