Why I Decided to Join a Clinical Trial on My 12th Birthday

Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.  

March 7, 2017 | 4 min read
Kathryn B.

Cystic fibrosis is something that is a part of me, but it does not -- and never will -- define me. I am not CF. CF is not me. But it is, however, there. I wake up during the night from coughing. I take an hour each day to do my vest and breathing treatments. I go to study visits, get blood drawn and have electrocardiograms.

This is my reality. I have CF.

A week before my 12th birthday, for example, the window to enroll in a certain clinical trial was closing. My doctor reached out to my family and asked if I wanted to be in the study. He wanted me to do it, but you had to be age 12 or older to enroll.

After some thought, I decided that I wanted to do the clinical trial. I wanted to know that I was helping other people with CF. I wanted to know that I could be making a difference. My family, friends and doctors encouraged it, as they wanted me to test a drug that could possibly help me and others. I felt a little nervous and scared -- afraid that there would be side effects or the drug would cause something bad to happen to me.

But on my 12th birthday, I found myself at the hospital giving blood and doing all of the other tests that were required to enroll in the study.

I did a pulmonary function test, and there were a bunch of blood draws (although there was only supposed to be one). They tried six times before it finally worked, and they got all the blood that was needed.

Next, I did a sweat test. I had done a sweat test before, but this time was different. I hadn't been allowed to eat and was worn out from the blood draws. I was stressed. Five of us were in a small room, and I was burning up.

I started to hyperventilate, and soon, I was having a full-blown panic attack.

After the panic attack, I finished the other medical tests and went home to wait for the results. We had no idea if I got into the clinical trial or not, and we also didn't know if I was going to be on the placebo or the actual drug. About a week later, we found out that I was accepted.

Being in the study wasn't as scary as I thought it would be. I actually enjoyed going to the study visits because they reminded me why I was doing it in the first place. Although it was hard not knowing if I was on the placebo or not, six months later I participated in the open-label extension study where I got to be on the actual drug.

I'm on the drug today, but soon the open-label extension will close. I'm going to miss being on this medicine. It was cool to be a part of something and to help other people like me.

That's the entire reason I did this study and why I didn't drop out. I did it simply so I could help push this drug through the process so other people could use it. I'm happy that I got to be a part of this clinical trial and will definitely consider doing more.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Parents & Guardians | Clinical Trials | Clinician Resources

Kathryn is an eighth grader who was diagnosed with CF at the age of 3. She and her family have been involved with her local chapter's Great Strides event for many years. Kathryn loves to read, dance and listen to music while swinging on the backyard swing set. At school, she writes for the yearbook and is in Winter Guard, and enjoys hanging out with her large group of friends. Kathryn writes poetry and is currently working on her first novel.

Recent Community Posts
Owning My Story
Blog | 5 min read
How CF Shaped My College Journey
Blog | 5 min read
Cycling Across America
Blog | 5 min read
You might also be interested in...