Finding Hope and Regaining Power After Diagnosis

The story of Melanee

I went to the ER complaining of chest pains and an hour later a doctor came to me and said “The CT scan revealed you have thin-walled cysts in all lobes of your lungs. We think you have a rare, progressive lung disease called Lymphangioleiomyomatosis or LAM. It only affects women and the average life span is 8-10 years after diagnosis. Many women choose lung transplant as a way to prolong their life.” I was devastated. I walked out of the hospital crying uncontrollably. I received a definitive diagnosis from The LAM Clinic at UCSF when they found I had angiolipoma’s on my kidneys. Angiolipomas are a type of benign tumor or skin lesion that contains blood vessels. I was also given hope at UCSF. I was directed to representatives at The LAM Foundation and paired with a mentor who unbelievably lived a few miles from me. I learned that some women with LAM are still living relatively healthy lives 20 + years after diagnosis. Many of the statistics I read online were outdated and inaccurate. My friends and family rallied around me after my diagnosis, but I entered into a deep depression. I felt powerless and I was drowning in fear and uncertainty. The rate of progression varies from woman to woman so you don’t know how long you are going to be able to climb that hill or even a flight of stairs. I felt like I wanted to rip my lungs out. Two months after my diagnosis, I crawled out of my dark hole and managed to start to fight back. I organized a letter campaign and raised almost $11,000 in two months. I noticed that a little power seeped back inside me. The next year I organized an LAM awareness social media campaign. I asked my friends and family to take pictures of themselves holding a pink feather, include a fact about LAM, and post it to a social media outlet. The pink feather is the symbol of hope for The Lam Foundation. The campaign reached thousands of people and was broadcasted on all forms of social media. Since it is believe that almost 300,000 women in the world are misdiagnosed or undiagnosed with LAM, I felt like awareness was just as important as fundraising. With a small pool of 30,000-50,000 women with LAM worldwide, we need more diagnosed women to participate in clinical trials. The social media campaign buoyed me and again reminded me that I do have some control over my future. My LAM is mild in comparison to other women. I wanted to help women who were experiencing severe symptoms. I wanted to advocate for them while I was healthy enough to do so. This year I’m dreaming big. The dream started to take shape after I realized that an annual golf tournament fundraiser or an occasional race or pie auction are not consistent ways to raise the amount of money that is needed to find treatments and eventually cures for rare diseases. Additionally, I realized that this was not all about me and my rare disease. There were millions of other people affected by over 7,000 rare diseases. I decided to organize a Kickstarter (crowd-funding) campaign that helps fund a mobile coffee business called Feather Coffee. A percentage of my profits will support rare disease organizations. I call this business model “cause brewing” and I would like to franchise it in the future. I would like to give rare disease families and communities a flexible, low-cost way to consistently raise funds for their rare disease organization. Just like I plan to do, they can take their mobile coffee trailer to weddings, festivals, fundraisers, farmer’s markets, sell coffee, and use their profits to raise awareness and funds for their cause. We started filming the video for the Feather Coffee Kickstarter campaign this month with hopes of going live in March. I know that I can continue to regain the power I feel I lost with my diagnosis and give hope one sip at a time. You can find out more about my campaign and follow my journey by checking out Facebook/feather coffee or @feathercoffee on Instagram and Twitter.