My doctor was not taking my endometriosis pain seriously, and it was time to advocate for myself.
"The CT scan revealed that you have a collapsed lung and you have thin-walled cysts on all lobes of your lungs," the doctor said. "I think you have a rare lung disease called lymphangioleiomyomatosis or LAM."
I had gone to the emergency room complaining of chest pains. An X-ray of my chest revealed a dark spot on my left lung. The doctor ordered a high-resolution chest CT scan. Thirty minutes later, she walked up to my bed and closed the curtain around me.
"The disease affects women in their child-bearing years, and the average life span is 8 to 10 years after diagnosis," she explained. "It is a progressive disease, so as the cysts continue to grow and block your airways, you will lose lung function, which means it will become harder and harder for you to breathe. You will eventually need supplemental oxygen. Some women choose lung transplant as a way to prolong their lives."
With those sentences, my life completely changed. I stumbled out of the ER not knowing what to do next. I asked my friend who was with me to drive to the ocean. I wanted to lie on the sand, feel the sun, and hear the waves. The ocean was my place of comfort. Once we got there, I lay on the warm sand for several hours. When I felt I had collected enough strength, I called my family.
I was referred to a LAM Clinic at the Interstitial Lung Disease Program at the University of California San Francisco Medical Center. I received a definitive diagnosis after an MRI revealed I had angiolipomas on my kidneys. Angiolipomas are a type of benign tumor or skin lesion that contains blood vessels; 50 percent of women with LAM have them.
I was also given hope at UCSF. I was told there was a foundation that represented my disease. Since only 50 percent of rare diseases have a foundation that supports patients and funds research, this was great news. The kind people at The LAM Foundation directed me to a woman with LAM who, unbelievably, lived a few miles from me. She was a tremendous help. I had so many questions, and there wasn’t a lot of information.
A disease is considered rare if less than 200,000 people have it; it is estimated that 30,000 to 50,000 women worldwide have been diagnosed with LAM. I learned that some women with LAM are still living relatively healthy lives 20-plus years after diagnosis, so many of the statistics I read online were outdated and inaccurate. Perhaps there was hope, I thought.
The rate of progression varies for each woman, so even though I was told my LAM was mild, I didn’t know how long I was going to be able to climb a hill or even a flight of stairs. The fact that I might live the rest of my life slowly suffocating to death was a cruel reality I had to face. Estrogen is thought to affect the progression of LAM, so women are advised not to get pregnant. I didn’t have children, and I wasn’t married, so I couldn’t help but think that not only would I never be a mother, but would a man even want me? I entered into a deep stage of grief. I was grieving the loss of my old self and the loss of the future I thought I was going to have.
Several months after my diagnosis, my fear became almost unbearable. My parents often stayed with me during the week and on weekends to help me cope. I didn’t want to exercise because I felt out of breath, and that feeling made me panic. I couldn’t stop evaluating if I felt more out of breath this week than I did last week. Every pain in my chest made me think I was experiencing another lung collapse. Seventy percent of women with LAM have multiple lung collapses after diagnosis. If a woman has more than one collapse on a side of her lung, she is encouraged to undergo a procedure called a pleurodesis, in which a chemical or talc is inserted between the surface of the lungs and the inside of the chest wall. This produces inflammation, which then causes the two layers to stick together and create a seal that helps prevent future collapses. The procedure is said to be extremely painful, and I couldn’t stop thinking about it with every breath I took. I wanted to rip my lungs out.
With the help of my family and friends, I managed to crawl out of my dark hole long enough to organize a fund-raising letter campaign for the LAM Foundation. I raised almost $11,000 in two months. I felt a few drops of hope and power seep into my body, and my fears started to lessen. A few months later, I organized a LAM awareness social media campaign. It is believed that many women in the world have undiagnosed LAM, so I feel that awareness is just as important as fund-raising. With only a small pool of diagnosed LAM patients, more women are needed to participate in clinical trials so a cure can be found. Since the pink feather is the symbol of hope for the LAM Foundation, I asked participants to take pictures of themselves holding a pink feather, include a fact about LAM with the picture, and then post it to social media. The campaign reached thousands of people and was broadcasted on all forms of social media. I felt loved and supported by the awareness campaign; it healed me in many ways.
In April, it will be two years since my diagnosis, and my tests reveal that my disease hasn’t progressed. I have no idea what the future will bring, but who does? I’m still navigating my way around the grief cycle. I have more good days than bad ones.
Being diagnosed with a rare disease is a horrible experience, but it does have its blessings. Since I’m more aware of my mortality and health, I’m more focused. In the last two years, I’ve made decisions and lifestyle changes that would have taken me decades to make. I no longer work at a job that requires me to sit in a cubicle in front of a computer for eight hours a day. I’ve given myself more financial freedom by moving to a city where my rent isn’t half my paycheck. Family, friends, and experiences have become more important to me than making a lot of money and owning a bunch of stuff. I’ve let unhealthy relationships go and embraced the people in my life who love and support me unconditionally. Finally, I’ve become a rare-disease advocate who is energized and determined to make a difference.
It is estimated that 350 million people worldwide suffer from rare diseases. The rare-disease community relies on grassroots fund-raising efforts. It takes millions — not thousands — of dollars to fund research for a rare disease. Without a foundation to represent a disease or a large pool of people with the disease who are raising funds, finding a cure is almost impossible. An annual golf tournament or pie auction isn’t enough. I can’t imagine being a busy mother or father of a child with a rare disease and feeling that finding a cure rests on your shoulders. You need to make money. You need to pay the bills. How will you find a cure for a rare disease at the same time?
I have an idea.
Food trucks and gourmet coffee shops have increased in popularity over the last few years. I’m a loyal patron of both. I’ve decided to combine my love of coffee and mobile food into a crowd-funding campaign that will fund a mobile coffee business called Feather Coffee. A percentage of my profits will support rare disease organizations. Feather Coffee’s products will also support a cause. For example, I’ve chosen to brew Three Avocados Coffee, a nonprofit that gives 100 percent of its proceeds to water projects in Uganda and education projects in Nicaragua.
I call my business model “cause-brewing," and I would like to franchise it in the future. I would like to give individuals, families, and communities affected by rare diseases a fun, flexible, low-cost way to consistently raise funds for their rare disease organization. Just like I plan to do, people can take their mobile coffee trailer to fund-raising and awareness events, farmers' markets, weddings, etc. They can sell coffee and use the profits to support themselves and their cause. I want to give the rare disease community hope one sip at a time.
I’m a huge fan of Etsy, so I reached out to sellers and asked for pledge prize donations. Over 100 artists so far have donated handmade items worth more than $4,000. The Feather Coffee crowd-funding campaign video is currently in post-production. You can learn more about my vision and follow my journey on Facebook, Instagram and Twitter, or visiting feathercoffee.com.