-Written by LAM patient Annette Roberts
I have always known I broke the mold for normal. I was given the diagnosis of asthma during college when I complained to a doctor of shortness of breath while walking on campus. I never felt like a true asthmatic. I knew people with asthma, and the softest whisper of the wrong scent would send them into horrible breathing spasms. I never had this happen. I just couldn’t go as far or as fast as I wanted to. I would hear, “You just need to build endurance”, or “You have a little extra weight slowing you down”. But knew my body and I knew that no matter how hard I tried I always had to work harder than the next person to be able to breathe.
Aaron and I were married October 13, 2007. Five years later we happily welcomed our daughter, Amelia Michelle on June 29, 2012. Within two weeks I became very sick. I couldn’t speak without coughing. I couldn’t walk from room to room without huffing for air. All the steroids, antibiotics, and inhalers that were prescribed to me didn’t touch the symptoms. A month later I had a chest CT done to look for a blood clot which could have occurred during labor. Unfortunately the test came back abnormal – the radiologist initially read it as emphysema. This definitely did not make sense based on my age, and I was never a smoker. I will never forget the moment when the pulmonologist walked into the room and said, “No, It’s not emphysema, It is something much worse. I am going to look in a text book and will be back.” That was when I first heard the word Lymphangioleiomyomatosis(LAM). We were given no other information and told not to believe everything we read on the internet, which of course we immediately scoured for information. I had a referral appointment scheduled for November and just kept thinking these doctors have to be wrong. And then, in October, my left lung spontaneously collapsed. I had read enough to know this is a common issue with LAM, and I had it.
We soon found the LAM Foundation and found hope. Aaron’s parents, Paul and Julie, immediately jumped into action. We were going to host a golf tournament to support the foundation that funds research and hopefully a cure for LAM. As we began telling family and friends about the benefit we had questions about how they could help if they didn’t golf. So in four short months not only did we organize a golf tournament but we added a dinner with entertainment and a silent auction. In our first year we raised $10,000 for the foundation. It couldn’t have been done without the love and support of all our amazing family and friends.