The Many Colors of Cystic Fibrosis: Blue
Joseph and the Technicolor Dream coat is one of my favorite shows. I see it every Christmas. One of my favorite songs, “Joseph Coat”, describes all of the colors on Joseph’s coat. I, the gross, chronically ill child would sing the song outside of the theater. The song was mostly sung while I was sitting on the toilet or after a not-so-successful blood draw.
“My arms are red and yellow and green and brown and blue…”
Cystic fibrosis (CF) is often represented by the colors purple and yellow. Residents of the United States wear purple awareness ribbons during CF awareness month, while the United Kingdom celebrates Yellow Shirt Day. However, cystic fibrosis dips its toes into a wide spectrum of colors.
Let's begin with blue
Blue is the color of the sky and the ocean. More importantly, it is the color that people turn if they lack oxygenated blood, a condition called cyanosis. Many cystic fibrosis patients struggle to breathe, more so over decades of built-up mucus, lung scarring, and chronic infection. I always joked that if we ran out of oxygen cannulas on the day of my wedding, I would be my own something blue.
Ironically, my oxygen tank who I lovingly named O2D2, played an important role on the day of my wedding. I had an FEV1 of 11% on my wedding day, so O2D2 was a prime member of my wedding party.
Cystic fibrosis also falls under different categories of disease – genetic, chronic, invisible, and rare. Two of these are represented by blue. Chronic diseases such as heart disease and diabetes are represented by light blue ribbons. Many cystic fibrosis patients struggle with both. Evidence indicates that cystic fibrosis causes widespread involvement of the cardiovascular system.1
I’ve been on metoprolol, a medication for high blood pressure, for a few years now. Cystic Fibrosis Related Diabetes, CFRD, affects 40-50% of adults. I do not have CFRD, but my blood sugar often plummets due to dehydration.
Medium blue awareness ribbons represent a lot of ailments including arthritis, Postural Orthostatic Tachycardia Syndrome (POTS), Sensory Processing Disorder, and vocal cord dysfunction. I am displeased to announce that I live with all of these! Often, the medication or symptoms related to a chronic disease like CF leads to other conditions. A build-up of mucus, the main Achilles heel in most CF patients – can cause a lot of inflammation - hence, the arthritis and osteoporosis diagnoses. Dehydration is another enemy, one that worsens the symptoms of POTS (i.e. racing heartbeat, fainting, dizziness).
Years of IV tobramycin mixed with sinus disease damages your hearing and vocal cords. I’ve had one vocal cord surgery and three sinus surgeries. Some CF patients have way more.
Even mental health is affected. Long-term IV use, isolation, and declining health can put a strain on wellness and self-esteem. Many articles discuss this battle with mental health. Teal represents some of these struggles, including anxiety and PTSD.
What else does the color blue represent? The color of a healing bruise? The balloons at your wedding? The inside of a cake during your post-trikafta birth announcement? I suppose blue represents a lot of things. Maybe one day we can all focus on the first two blues – the sky and the sea.
Have you had a flare on Trikafta?
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