#TalkClinicalTrials: Lara Ceroni’s Experience
Lara Ceroni’s sister, Tina Ceroni, has a rare autoimmune disease characterized by life-threatening muscle stiffness and spasms. Tina participated in a clinical trial and had a stem cell transplant at the Ottawa Hospital as part of it. The clinical trial treatment resulted in Tina’s disease going in to remission and has improved her quality of life greatly. Below, Lara opens up to Clinical Trials Ontario about her sister’s experience with clinical trials.
Can you tell us about your family’s health story and involvement in clinical trials?
For a long time, my family lived in considerable amount of doubt and confusion about my sister’s disease. We spent years trying to find answers about her condition, and spent even more years trying to come to peace with her disease once we had the proper diagnosis. Tina has an extremely rare neuromuscular disease, and the prognosis was very dire. There was no known cure or quantifiable treatment plan that worked for her, so for a long time we couldn’t see the future and didn’t have much hope that Tina was going to make it through this horrific disease and come out on the other side of it. It was a really terrifying time for all of us: The not knowing. Her treatment plans were losing their efficacy while her symptoms were getting increasingly stronger and more dangerous to her health.
If it weren’t for the opportunity to participate in a clinical trial, I’m fairly certain Tina wouldn’t be here today, or her life would be so compromised to the point it would be unrecognizable. We had no prior understanding of clinical trials until this option was presented to our family – we never had to – but once we educated ourselves, with the help of the tremendous team at Ottawa Hospital, we felt hope again. Clinical trials give people hope, and also reflect the ever-changing evolution of medicine and that of the medical field.
Why do clinical trials matter to you and your family?
Well, simply put clinical trials saved my sister’s life. Without it, she wouldn’t be here. Initially we were really reluctant to volunteer her life for this clinical trial. By their very nature, clinical trials are experimental: they are designed to test new treatments and interventions on people as a means to find a cure, but they come with an immeasurable amount of risk and unknowns. We were scared to do this – what if it didn’t work? What if we did all of this for nothing? But at that time, Tina was critical to the point her disease was potentially fatal. We had no other choice, and we are so incredibly grateful that we took that leap of faith to join this clinical trial and go through this difficult time because it gave Tina her life back. Her treatments, although effective early on with her disease, were no longer working. This was our only choice left and although I don’t want to speak for Tina, I think she knew this had to happen, regardless of the pain and uncertainty involved. As a family, we would do anything to protect each other, especially in time of crisis, and clinical trials opened the door to a future that we couldn’t find before. I don’t doubt for a second that if we didn’t go through this clinical trial, Tina’s life would be devastatingly different today.
What advice would you give to others interested in participating in clinical trials?
My advice to people looking into clinical trials is to do your research. It’s a confusing world, the world of clinical trials, and you have to understand what it is you’re looking for, or if the trials on offer will actually help you find a cure for whatever ails you. This won’t happen overnight, so a lot of patience is required, and a lot of motivation. You really have to fight for your health, and although we live in a country that supports healthcare, we still have to fight for our well-being. Join support groups, do your research and understand your condition well enough to know what treatments will work, and which ones won’t. Know that clinical trials don’t always work – that’s a really difficult reality to come to terms with, but you have to go into a clinical trial understanding that they aren’t always a means to a cure. They will be difficult, and there will be a lot of unknowns, but if you find yourself at a juncture in your illness where your treatment plans are no longer working, then this is another option that could give you your hope back.
CTO wishes to thank Lara and Tina for sharing this story as part of #TalkClinicalTrials, a campaign led by Clinical Trials Ontario with support from many voices to build awareness of clinical trials. Why? Because clinical trials matter to all of us. They help to generate better treatments and technologies and ultimately help shape the future of medicine. Engagement from patients and the public is critical to shape and conduct high-quality clinical trials.
Clinical Trials Ontario can help you navigate clinical trials
Are you thinking of engaging with clinical trials? We have tools and resources that can help. Use our Clinical Trial Finder tool to find open clinical trials in Ontario or across Canada. You can search by disease, location or demographics. Use our educational modules to learn more about what clinical trials are and what you should know before engaging with one.