Connections

When I meet someone else who has Celiac Disease, I feel an instant connection.  I instantly feel less alone and feel free to talk about my life with my autoimmune disease.

It’s similar when I meet someone else with an autoimmune disease of any type.  You can talk about struggles and get to know what other people struggle with, help educate others about their disease and spread the word for awareness.

One such person is the daughter of my best friend, Shawna.  Her name is Courtney and Courtney has cystic fibrosis or CF.  According to the Mayo Clinic, “Cystic fibrosis is an inherited disorder that causes severe damage to the lungs and digestive system…But in people with cystic fibrosis, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.”  In short, this disease makes it hard to breathe, breathing is necessary for life so this is a disease that can be life threatening, if not handled correctly.

Ever since I’ve known Courtney, she has tackled this disease head on.  She’s always had a smile on her face and had been an advocate for those that have CF and has been vocal about what the disease is and is always educating people.  Yes, she’s been in the hospital a few times in the past year and a half for “tune ups”, to get her lung function back where it needs to be.  She plays guitar and sings and doesn’t let this disease stop her from doing things she loves.

Courtney turns 16 tomorrow.  This is key because there are several people with CF that don’t make it into their 20’s.  Even less into their 30’s and, well, you get the picture.  Yes, treatments and, now, experimental drugs are helping life expectancy but with CF, the simplest things can trigger shortness of breath.  As a teenager, Courtney loves going to haunted houses.  This year I went with her and Shawna and the fog machines started affecting her ability to breathe.  Things that I wouldn’t think about if it wasn’t for Courtney.  And, as an advocate, she isn’t afraid to stand up for herself in cases like the haunted house or to make sure that a restaurant doesn’t allow smoking, and many other instances that I wouldn’t think about.

Speaking of experimental drugs, Courtney was one of the fortunate ones to be able to take this drug that is meant to keep her lung function where it’s at, giving her a longer life with the lungs she has and, hopefully, to not have to have a lung transplant for a long time or ever.

Why am I writing about another disease?  Because Courtney and I not only have autoimmune diseases (and both agree that they suck) but we also share a birthmonth.  Poor Shawna, having to deal with both of us and our birthday talk all December.

Two things as I end:  1)  The more we understand about other autoimmune diseases (Shawna and Courtney, please forgive me if I got info wrong!), the more we can help others and they can help us educate and advocate for Celiac Disease.  2)  I want to wish Courtney a very happy Sweet 16th birthday!  Here’s to many more, dear!

 

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