The cure won’t find itself - but research could pave the way
Kamil Sterniczuk, has gone from being a patient to trial participant to public contributor. Teacher of English as a foreign language by profession, he currently works as a part-time postman and Polish interpreter. In this blog he writes about his experience taking part in a clinical trial and urges others to get involved in research too.
The diagnosis of an incurable liver disease came as a shock to me. A common misconception is that it is reserved for people leading unhealthy lifestyles. Although it can be associated with alcohol and drug addiction, liver disease can affect anyone. Disbelief, anger, bitterness, fear and despair were the feelings I experienced after my consultant broke the news to me that I might need a liver transplant one day. “Aren’t liver transplants meant for the really, really sick or those people who’ve eaten a poisonous mushroom?” – I thought. Apparently, others need them too.
My first move was to find out as much as I could about my illness: primary sclerosing cholangitis (PSC) a rare autoimmune liver disease where bile ducts become inflamed, stiff and clogged. I browsed the length and breadth of the Internet and started reading research papers. Family and friends comforted me by saying I only needed a temporary change to my diet and lifestyle (less stress) for the disease to disappear. After all, the liver is the only organ that can heal itself. Sadly, it is not the case in PSC, as bile is not drained properly this may lead to cirrhosis and other life-threatening complications. To make matters worse, PSC is tremendously complicated and its course and progression depend on numerous factors. Hence, two patients may have different symptoms and prognosis.
Research- a silver lining
The silver lining is that there is a coordinated effort around the world to find a cure. Clinicians, researchers and medical professionals look into the disease from many angles: what causes it, how to stop progression, how to cure it, and resolve the most debilitating symptoms like fatigue and severe itching. One of the consultants involved in my care introduced me to clinical trials. Before, I had thought that medical research happened mostly in laboratories and was beyond the reach of the average patient.
The first study I participated in was a trial for a new treatment. I still don’t know whether I was given the actual drug or a placebo. However, it doesn’t matter as I feel I have made the right decision to participate. I may have not helped myself but perhaps my contribution helped others. My participation in the study involved taking time off work to attend fortnightly study visits. In return, my condition was closely monitored, with some additional tests being done, and I had a dedicated research nurse whom I could contact any time.
With time came opportunities to participate in more studies, which I always seized whenever I was eligible. I had a new generation MRI scanner tested on me and I spoke extensively to researchers about the quality of my life, just to give two examples. All these experiences have helped me to understand my disease better and stay in the loop about current research trends and discoveries.
Filling in the gaps
It is important that patients participate in clinical trials, especially the ones pertaining to rare diseases where the pool of candidates is very limited. Your participation may not necessarily make a difference to your health but each chunk of health data contributes to the bigger picture. This helps fill knowledge gaps, discover and test new treatments and medication for the benefit of future generations. Everyone wants to see the world without disease and suffering but someone has to step up and make an effort. Even if it means some challenges, please consider becoming a clinical trial participant.
Find out more about the Be Part of Research campaign and how you can take part in studies.
Read more about Kamil’s journey from patient to public contributor in his previous NIHR blog.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.