Why do I participate in research?
After living with multiple sclerosis (MS) for 18 years and speaking with hundreds of patients as a patient advocate, I know that many patients feel skittish about participating in research. That’s why I want to share with you the story that made me committed to participating in research as a child and even today as a mind-body practitioner.
When I was diagnosed with MS in 1998 as a 12 year old, a doctor explained to me that the lesions (areas of inflammation or damage) on my brain would never repair. I recall staring at the first MRI slides of my brain as a child. I couldn’t take my eyes off those white circles that indicate a lesion. I remember feeling at the time that what he said didn’t make any sense. How could it be that my brain can’t repair itself? The body is the most advanced machine on the planet, it creates human life. How could it not be repaired?
This would be the first of many times that I proved science wrong. Six months after my first MRI, I got a second scan. All of my neurologists (yes there were several) were stunned as they stared at the second set of scans. They were puzzled by the obvious repair of many of the lesions that were present on my first MRI. We now accept it as normal that the brain repairs. Science and medicine have studied the phenomenon extensively – it’s called neuroplasticity. In short, the brain is plastic and is constantly generating new neurons and repairing damaged ones. Unfortunately, studies exploring neuroplasticity did not start until after my diagnosis, so I was given grimm information. Most importantly, it was FALSE information.
Other twelve year olds deserve hope. The next person receiving a diagnosis deserves hope. YOU deserve hope. All of us deserve hope. Most importantly, we should never be told false information. At the very least my doctor could have said “we don’t know.” The point is, the more studies are conducted, the more answers or at least possible solutions we can provide. Of course, the decision to participate in research is nuanced and it’s important to be discerning when deciding to participate. In future blog posts, I will share how to evaluate different research studies and determine your comfort level with participation.
But for now, I want you to know that even though things might be hard right now, research is happening at every moment that could change your disease course and certainly change it for generations to come. I participate in research because I love knowing that I might be able to help create a life altering discovery for millions of people. And of course I hope that it will also impact me.
I have found that many patients feel disempowered when it comes to knowledge of their disease and progress in research. It’s important to educate yourself as much as possible so that you feel empowered when it comes to research opportunities and even more so to become an advocate for research. I believe that every patient should actually be a champion of research.
I am personally a champion of research because that is the only way we are going to get better treatments, find cures, and understand the nature of different diseases so that we can make choices that serve our health and wellness instead of further illness. Let’s not forget that this is coming from an expert in the mind-body connection. As an Illness Recovery Coach, I work with people to experience relief from their symptoms through the power of the mind. So you might be wondering, “why would she champion medical research?” I’m glad you asked!
Much of what I do is based on scientific research. Research is not only about creating medications, it also helps us understand how the body functions and how the different systems in the body interact. For example, a tool I use regularly with clients is the Emotional Freedom Technique (EFT). Studies show that tapping on specific points in the body (the practice of EFT), calms down the amygdala, the part of our brain that triggers our fight or flight response. That research is essential to helping people reduce symptoms of illness by managing stress. So yes, as a mind-body expert, I am a champion of research.
Furthermore, even though I believe in the mind-body approach, I still believe in the importance of medication. People deserve relief and I am personally so grateful for the medications I benefited from through my journey with MS. The drug Tysabri, for example, changed my life. While the expense was exorbitant, it gave me my life back. Was it worth it? Yes- you can’t put a price-tag on health. And I am so grateful to every patient who participated in research so that the use of Tysabri for MS could be possible.
A sentiment among some patients is that the biotech and pharmaceutical industry is the enemy. The feeling is that these companies are “profiting” off of patients. That’s a very narrow-minded perspective that quite frankly is not serving us as patients. These companies are investing millions of dollars in several studies on the off-chance that one of them will lead to the game-changing drug you’ve been waiting for. I am personally grateful they are taking the financial risk. Of course they are the ones who will make the financial gain on the other end, but we gain too. So does our family, community, and the world. When one person can live life more fully, the entire universe benefits from that person’s life and health.
One of the things I celebrate about SanguineBio is that it’s a biotech that takes this dynamic into account. The company recognizes that pharmaceuticals might strike gold based on research you participate in and therefore, you deserve more engagement in the process. It’s why they compensate patients for participating in research. I look for the same transparency and patient-centricity whenever I participate in any research study. I make sure I feel heard as a person and not another number. And at the end of the day, we all have the same goal – effective treatments with less side effects; in short, healthier lives.
While participating in research might raise some questions or make you uncomfortable, I urge you to think about your future and of others to come. It is important to still be responsible in choosing what types of research to participate in, but don’t let your feelings about pharmaceuticals or your own discomfort to try something new be the reason science slows down. You can be a champion of research by looking into different types of research and identifying the kinds of studies that feel most comfortable to you. We did not choose illness, and each of us is entitled to live with illness however we want, and do what is best for us. Just remember that we do have the choice to advance wellness for ourselves and others.