“I don’t want to do it,” I said to my mom as we entered the elevator. “Let’s just go talk to them,” she replied to my dismay. I didn’t want to be there. I didn’t want to have hypersomnia. I didn’t want to do a clinical trial—it sounded so scary and so unknown.
When we entered the office though, it was not a scary place. Everyone working there—the doctors, clinical coordinators, and nurses—were all so incredibly friendly. They were so excited to enroll people in the trial. They took all of the time we needed and answered our long list of questions. They went over every detail with us and explained the whole process. My mind on participating in the clinical trial suddenly began to change.
I decided to enroll, but, even after agreeing to it, I still had my doubts. Was it really worth the time? Was it worth not being on any other medications? Was I really going to make a difference?
Having now successfully completed the trial I can honestly tell you that YES, it was worth it! A million times over. I believe my participation did make a difference, and I am hopeful that my results will help clear the path for newer, more-effective medications than the ones we currently have.
Have you ever thought about participating in a clinical trial? Maybe you haven’t because you’ve had some of the same concerns I had. Maybe you are fearful because you just don’t know what to expect. I hope that by sharing my experience I might encourage you to take the plunge.
During the trial you will have a set schedule to follow. Knowing this, I worried about how it might interfere with other things that were already on my calendar. The team worked with me and helped me plan my calendar out so that I was able to follow the protocol dates and also be free for Thanksgiving, my sister’s graduation, and other visits with family and friends, and my trial was completed by Christmas!
About every other week, I went to the clinic for a visit. This consisted of a quick physical, completing surveys, and usually a blood draw and urine sample. This may sound like a pain—doctors’ appointments are usually not fun, so why would you want to sign up for even more?! They did not seem like doctors’ appointments at all! I looked forward to these days because I got to go see everyone at the office who quickly did not seem just like my doctors, nurses, and coordinators, but as my friends. I was excited to let them know every week how I was doing because they genuinely cared and wanted to help find a medicine that would help me just as much as I wanted it.
The worst part of the whole process was the sleep studies. Nighttime sleep studies are a piece of cake! Hook me up and I am right asleep. But daytime sleep studies (technically called Multiple Sleep Latency Tests or MSLTs)—ugh! For anyone with hypersomnia who has experienced a daytime sleep study, I am sure that you can agree with me that they are a certain form of torture! Not being able to sleep when our bodies so badly want to—horrible! But it was worth it.
Throughout the entire process, the team was very helpful. They answered phone calls and emails from me with questions at all hours of the day. They check up on you and always let you know that they are there for you.
I will not tell you that it was easy. There were times when I wanted to quit, and it is a commitment that takes some time. You will have a set schedule to follow. You will have some overnight and all-day sleep studies. You will have clinic visits and diaries to complete. But it sounds much harder and much more time consuming than it really is! I promise!
The best thing about being in the clinical trial is that yes, even me, one sleepy head who didn’t think she could make a difference, did. Whether this medication is a miracle drug or a complete bust, I helped with knowing that. I helped in studying hypersomnia and in someday finding medication or even a cure for hypersomnia. When I was completely grumpy and mad from not being able to sleep at a daytime study or my veins were a bit bruised from blood draws, I only had to remind myself of this to keep going. Hypersomnia changed my life. It took finishing college away from me for the time being. It has taken friendships and changed my social life. It tests me daily and has pushed me mentally and emotionally. But it cannot take away hope and it cannot take away the fight to find medicines and one day a cure that will give us all our lives back. Being in this trial was a way for me to show this. No matter how many hours a day I need to sleep or how tired I am, I can take the time and make the commitment to participate in the trial because every person enrolled is a huge step forward for all of us.
Learn about the latest hypersomnia research on June 12th at the Hypersomnia Foundation’s regional conference, Beyond Sleepy in the Mile High City. Scientists will share findings from their recently completed clinical trials and other ongoing studies, lead us on a journey through the drug discovery and approval process, and help us to cope with the daily struggles of hypersomnia. You will also learn how your future participation in the registry can help to solve the puzzle of hypersomnia.
Order your $25 ticket on line to join us in person in Denver or wait until June 1 to sign up for a live Internet stream of the conference, brought to you free of charge through the generous support of Balance Therapeutics, Inc., and Flamel Technologies, SA.