Name: Jenna Coombs
Province you live in: New Brunswick
How many clinical trials have you participated in: 1
Describe yourself in one word: Ambitious
Please introduce yourself:
My name is Jenna Coombs and I am 26 years old. I was diagnosed with cystic fibrosis (CF) at four months old. At 16, I was diagnosed with CF related-diabetes and at 22, I was diagnosed with Rheumatoid Arthritis. Though there have been many obstacles in my life, I have never let these things slow me down. Despite the odds, in 2019 I gave birth to a handsome, happy and healthy baby boy. I am very lucky that throughout my entire life I’ve had a great support system of family and friends!
PLEASE SHARE YOUR CLINICAL TRIAL EXPERIENCE:
My CF clinic team has mentioned clinical trials to me throughout my life and I have always been interested in participating in one, however, up until 2017, there were no trials that I was eligible to participate in. In January of 2017, I had the privilege of participating in my first clinical trial. After being told the potential positives and negative side effects that could come with participating in the clinical trial I was nervous. However, I was really glad I met the criteria and could see on a personal level just how well this new treatment could potentially work for me. I discussed the pros and cons with my family and we all felt that the pros of the trial, out-weighed the cons.
After doing bloodwork and additional Pulmonary Function Tests (PFTs), my CF team decided I was healthy enough to begin the trial. At the beginning of the trial, I was seen at the CF clinic every two months and my weight, bloodwork and PFTs were monitored closely. I experienced some of the negative side effects that can come with taking the medication such as; nausea, vomiting, fatigue and rapid weight gain. I knew these were all a possibility but I had hoped I would be one of the lucky few who wouldn’t experience any. After a week, the nausea and vomiting stopped and the fatigue had improved as well. After a month of persistent weight gain, I was told if this were to continue I could no longer participate in the trial. As a CF patient who has been waiting for new treatments, this was devastating. I didn’t know if this opportunity would arise again or if I would meet new criteria’s in the future. Luckily, the weight gain stopped and I am able to continue taking the medication.
In my opinion, taking part in a clinical trial is important for multiple reasons. First, you could be benefiting your own health and helping to prolong your life. Secondly, you could be helping future generations to have access to life-changing medication. I am forever grateful that I was given this opportunity and that I continue to receive this medication to this day. This clinic trial has changed my life for the better. My lung function has stabilized with minimal fluctuation. I do not get out of breath as quickly as I have in the past and my cough has significantly decreased.
For any CF patients who have been asked to, and are eligible to, participate in a clinical trial but are undecided whether to participate or not – I would say go for it. You’ll never know what the outcome could have been, if you never give it a chance. If I was given the opportunity to participate in another clinical trial, I would again in a heartbeat! By participating, I feel as though I have helped researchers get one step closer to finding a cure for cystic fibrosis.