The story of Sarah
I was diagnosed with lymphangioleiomyomatosis (LAM) in 2010, shortly after my wedding and my 30th birthday. LAM is a rare, progressive lung disease that mainly impacts women. It was, and still is, incurable. And it is often fatal. At the time, median life expectancy was 8 years. I was told I shouldn’t have children. I had to start using supplemental oxygen when I exercised and got on a plane. I went on a medication that was still being studied in clinical trials (it has since been approved). I was terrified.
But then my husband and I went to Spain. We had always loved to travel and had this trip planned shortly after my diagnosis. My doctor encouraged me to go and helped us plan for it. It was exactly what I needed. I stopped thinking about only myself and my disease and my fear. I started thinking about the things I was seeing and experiencing and eating.
That was almost 10 years ago. I’m still considered “stable.” In fact I feel healthier than I have in years. I’ve been to 60 countries around the world, most of which I visited after my diagnosis.
Seeing the world is what helped me and my husband cope with having this crazy thing called LAM thrown our way. I encourage anyone with a rare disease who wants to travel but is afraid to do so to not give up. It may be more challenging than if you’re healthy, but it’s definitely doable. And it’s absolutely worth it.
If you want to read more about the places I’ve been or traveling with a rare disease in general, check out my blog, www.travelbreatherepeat.com
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*Find others with LAM on RareConnect, the online platform for people affected by rare diseases