by Maria Jose Salazar, LAM patient
After several months of suffering from shortness of breath, I asked a friend of mine, who is a doctor, what he thought I should do. He told me to get a chest X-ray; that is when I started to worry because my X-rays revealed that something was wrong with my lungs. He referred me to a specialist and told me to get a CT scan before going to the specialist’s office. On August 3, I was diagnosed with this rare disease I could not even pronounce: lymphangioleiomyomatosis – LAM. My pulmonologist explained what he knew about the disease and of course I was devastated.
Since then, my life has been completely different. I live in Guatemala, and there are no other cases of LAM registered here. Together, my doctor and I started searching for information about LAM and how to treat it. We did not know where to start.
Two weeks later, I started with chest pains and went to the emergency room: my right lung had collapsed. This is when my real journey with LAM began. After four days in the hospital, the problem was solved and I went home. As you can imagine, my family and I became worried because we did not know what to expect next. Within the same week, my right lung collapsed again! The doctors decided to perform a surgical pleurodesis. While in the hospital, my sister started to find out more about The LAM Foundation and noticed LAMposium was scheduled a few weeks later in Cincinnati. I was scared and did not want to learn much about the disease, and of course I could not even think about traveling. But she insisted and got in touch with the Foundation. To my surprise, I was being invited to attend and I could not say no.
At that moment, I was so confused. I did not know how to feel; sadness, grief, fear, loneliness and uncertainty were some of the feelings I was carrying around with me. I had no idea what to expect from LAMposium. I felt very anxious. When the first night of the conference arrived and I met The LAM Foundation staff, my feelings began to calm. The next day, I met other patients, listened to their different stories and to my surprise, my heart began to settle. I was not alone. These wonderful, strong and happy women are fighting LAM just like me. I cannot describe how it feels to find so many people including researchers, doctors, The LAM Foundation staff, patients, family and friends working so hard together to find a cure. I know they have not achieved this goal yet, but they have found ways of giving us a better life quality. I am really thankful for the hard and endless work they do. I feel the love involved in every single detail of the research completed.
I am very grateful I had the opportunity to meet other amazing women who support each other every day and others who were feeling anxious, just like me. I am especially thankful for the opportunity to meet a new, dear friend who lives in Mexico. She has a similar story to mine regarding LAM, and we keep in touch all the time. I will never feel alone anymore. Eli and her husband are very special people; in their own way, they give me the support and strength to continue fighting and walking through this journey.
I can surely say that I am different person after LAMposium. I see life in a completely different way. I am convinced that every person I met there, along with my family, friends, and doctors, is part of the team of angels that God has sent to me.
Thank you very much for giving me hope!
Interested in attending LAMposium in either Washington, DC or Los Angeles, CA? Click here to get more details. Financial assistance is available for women with LAM who are interested in attending the conference. Click here to apply for the LAM Family Network Travel (LFN) Grant. If you have additional questions, contact Mary Sue Wentzel, RN, MSN, Patient Services Manager at (513) 777-6889 or firstname.lastname@example.org.