I originally planned to post a “CF cheat sheet” to kick off CF Awareness Month, but then my dad sent me this picture.
It arrived in his mailbox yesterday, sent by an old family friend completely out of the blue.
The fact that it showed up the day before the start of CF Awareness Month was uncanny: The day after this picture was taken I started a 15-year journey to what would ultimately be a diagnosis of CF.
It was Memorial Day weekend, 1985, and I was just eight months old. I’d been struggling to put on weight (despite my apparent chunkiness) and my parents were desperately trying to figure out what was wrong. The next day they took me to my pediatrician, who immediately admitted me to the hospital after discovering my veins had collapsed. One of the many tests they ran was for cystic fibrosis*… and it came back negative. During my 10-day stay – what I can only imagine was a harrowing experience for my parents – no definitive diagnosis was made and I was sent home.
Fifteen years later – after even more bloodwork and doctor’s appointments and puzzling health issues – we learned that despite the negative test so many years ago, I did, in fact, have cystic fibrosis.
And what a journey it’s been.
The hardest part continues to be managing the disease as an adult. It takes its toll, both physically and emotionally.
But I am so very lucky. This year Mike and I will celebrate our second wedding anniversary, I have a job I love, and I’ll turn 30 (!!!) in September.
I am beyond grateful for the advancements in CF treatment that have allowed me to reach these milestones so many patients before me didn’t get to do. But there’s still work to be done.
My greatest hope is that one day there will be no CF diagnosis to give. That no one – parents, children, adults – will have to wonder what a future with CF looks like.
I have hopes and dreams and goals, just like anyone else… and while I’m doing all I can to make those happen, the what ifs are always there.
What if I never have children? What if I do but I don’t live to see them grow up? What if I don’t have the chance to finish out my career? What if I don’t get to grow old with my husband?
Over the past few years there’s been astounding progress in treatments for cystic fibrosis. In 1984 - the year I was born the life expectancy was just 25. That number has now risen to 41.
And there are all sorts of exciting developments on the horizon that will not only improve the quality of life for CF patients, but continue to extend it.
I truly believe the most crucial part to finding a cure for CF is understanding. While CF is being talked about more and more, I’m still constantly surprised by how little is known about what it is and who it affects.
That’s exactly why I share my story.
Putting faces on this disease – showing that it’s daughters and sons, mothers and fathers, wives and husbands – humanizes it. People with CF are leading lives just like everyone else, and we want to continue to live them.
Over the next month I’ll be sharing more of my experiences and struggles with CF, as well as all the ways you can help.
This little ol’ blog has been a wonderfully therapeutic space for me over the years (even though it often collects dust) and I will never be able to express my gratitude to all of you who continue to read my words and support the cause.