In April I learned a new word, while attending a banquet in honor of hundreds of women from around the world living with an incurable disease. One of these women is my Aunt Sophia. The word is lymphangioleiomyomatosis (LAM). Try saying that four times fast (it’s pronounced lim-fan je-o-lio-mi o-ma-to sis). It is a rare lung disease that affects almost exclusively women, according to lam.uc.edu. The disease occurs when unwelcomed muscle cells, also known as cysts, develop and grow on the tissues of the lungs, obstructing airways, blood and lymph vessels. The cells are not cancerous but they grow rapidly to the point where the lungs are prevented from providing oxygen to the entire body. Eventually, women with the disease will require the use of external oxygen tanks to regulate oxygen flow and need lung replacements. Sophia’s diagnosis is mild but the chances the disease will become progressively worse are great.
I attended the banquet in Cincinnati because I knew my aunt was sick and would appreciate my support. Plus, Cincinnati was barely an hour away and offered a chance for my boyfriend to meet a few members of my extended family.
However, I did not realize the finality of her illness until I witnessed other women with different stages of LAM surrounding me. Seeing a 30-year-old woman wearing an oxygen tube that was attached to a disguised external oxygen box startled me. I caught myself thinking, “Aunt Sophia can’t be that sick, she doesn’t require an oxygen tank yet.” But, this assumption just further exposed my ignorance of the disease.
I learned that LAM was discovered in 1937 and there is no known cause. Moreover, the disease affects women during the prime stages of their life between puberty and menopause. There have been even a few cases when women have discovered they have LAM during a pregnancy after a sudden lung collapse.
Much research is required to uncover the origin of LAM and to discover an attainable cure. Unfortunately, LAM is extremely rare and it is estimated that there are 1,000 known women who have the disease in the United States alone. Yet, the disease affects women worldwide and many women are living undiagnosed. It is suggested that women suffering from chronic coughs, asthma, chest pains and frequent shortness of breath may have LAM but are unaware.
I felt completely helpless after learning all the statistics and information because I love my aunt and I do not want to think that she may be growing sicker. I rarely see her enough as it is since she lives in Florida. She is not the sickly type. She is vivacious and loves the outdoors. She is one of the strongest, most independent women I know. She has watched me grow up from a stubborn, wily adolescent to a considerably better-behaved young woman. I can’t imagine life without hearing her rambunctious laugh or Jamaican accent.
My Aunt Sophia provides a portrait of my family history. I come from a long line of loud independent Jamaican women. Rarely, will the volume level of any conversation not exceed the suggested “inside voice.”
We yell because we each demand the right to voice our opinions and there are no bounds to the propriety of topics. Sophia is the center and I cannot image these coveted interactions without her unforgettable presence. This past summer, I spent ten days visiting my mother’s native country, Jamaica. Sophia is my mother’s sister and she planned the trip for just the women of the “family” to spend time with my estranged grandfather. Visiting Jamaica for the first time was different from what I expected, aside from the promised white sand beaches.
I anticipated seeing beautiful vegetation, lots of people vacationing at resorts and smiles of happy people everywhere I went. But, the trip was purposely arranged to provide my younger cousin and me with a glimpse into the real side of Jamaica beyond the stereotypical tourist expectation. Sophia wanted us to see the Jamaica my mother and her sisters knew. Instead, Jamaicans look like regular people and are hard working people who do not all sit around listening to reggae.
I gained perspective and acceptance of my culture because of the encouragement and earnestness of Sophia. The finality of LAM is unbearable to imagine. It is painful to think that I am just a college student struggling to grapple with the fact that someone I love is suffering and I can do hardly anything to remedy the progress. Ultimately, more funding needs to be raised for my aunt to be cured.
The banquet had a silent auction and open bidding floor for financial pledges to fund further research for a cure for LAM. Watching the people in the room eager to support one another was a great encouragement for me to witness.
Last year, the foundation raised over $100,000 and I hope this year that number was exceeded. The foundation’s motto is, “A Breath of Hope,” and I am excited to know that they are working tirelessly to return hope to women living with LAM.
This piece was originally published in The Miami Student newspaper, April 14.