As many of you know by now, I work as an illness recovery coach and help people get long lasting relief from symptoms of chronic illness through the mind body connection. I live and breathe the science of how emotions affect physiology and vice versa. So what on earth am I doing writing the patient blog for Sanguine BioSciences, a biotech company aimed at advancing personalized medicine? Put another way, why would a company focused on advancing medical intervention ask someone like me to write on its blog? On the surface it might seem like a conflict of interest or even just differing values. In truth, our values are much more aligned than not.
Sanguine’s CEO, Brian Neman, had the idea to start the company ten years ago when he learned that researchers all over the world wanted to create targeted treatments for patients, to ultimately make them much more effective, but were stalled due to a lack of access to biospecimen samples and data from individuals with diagnoses. In high school and college, Brian watched me face the debilitating symptoms of multiple sclerosis (MS). He felt that if someone like me, who grew up with MS, knew that research was stalled because of a lack of data and samples, I would want to be part of that research and get closer to better medication for myself and others. As you can imagine, he was right. When he first told me about the delay in precision medicine because of a lack of access to people with diagnoses, I was pretty surprised. We reviewed the statistics together, spoke to researchers all over the globe, and in fact this was a very serious issue. Meanwhile, others with MS, people with Parkinson’s, lupus, muscular dystrophy, fibromyalgia and other diagnoses were guessing what medication might work for them with only 60% of them experiencing improvement.
Having been a patient advocate from a very young age, I understood the reason for this gap. Patients tend to be wary of clinical research because there can be a lack of transparency. The hesitation is understandable. But one of mine and Sanguine’s goal is to educate others about the clinical research and drug development process.
Sanguine BioSciences was born out of a desire to help patients live better because its founders believe patients deserve better. With a focus on this mission, Sanguine puts patients in the driver’s seat and even shares the wealth. I know this is beginning to sound like a Sanguine commercial, but it isn’t. I believe it is genuinely important to understand why someone like me who no longer needs any kind of medical intervention still champions Sanguine solely based on our aligned values.
Sanguine stands by its founding values by answering the concerns patients have about the industry. It makes research participation easy and even goes further by generously supporting patient organizations that help with improving daily life of those facing chronic illness. Sanguine’s vision is also to change the way researchers view patients by one day creating a direct relationship between patient and researcher- so that we are more than a number being studied, but instead will be seen by a researcher as “Kaley who faced MS as a twelve year old.” Those researchers will have more motivation, compassion, and insight as a result.
I became an Illness Recovery Coach not because I reject medical intervention. At a certain point, medical intervention fell short for me. I would get relief, but I was largely guessing when it came to which medication to try next and how to best help my body. Had precision medicine existed at the time, my story would likely be a different one today. But it didn’t exist yet and I had to search for something that would help my body beyond the medical interventions that were available at the time. By learning about the mind body connection, I was able to unearth scientifically backed techniques that provide relief for the body and techniques help the body process and accept medications more effectively.
Sanguine’s mission is the same- to fill in the gaps and help us all get closer to interventions that are more effective and precise. I believe patients worldwide are lucky to have Sanguine in their corner. When it comes to my own work with patients, when one of my clients has a better baseline of health because they found the right medication for them, my work with them is much more effective. The mind body approach is even more powerful when we have a good foundation thanks to advanced medicine.
So, while at first glance this might seem like an odd match, the truth is, it’s a match made in heaven. Sanguine understands the current shortcomings of medical intervention for patients which is why the company aims to serve patients not only through research, but also by having other services to round out the support such as this blog and workshops throughout the year. Sanguine sees us as whole people, not just a test subject in a study. We matter, and Sanguine understands that wellness involves all aspects of the human being- mind, body and soul. In truth, it actually makes perfect sense that someone like me would write their patient blog and I feel privileged to get to do it.