Help PHE Sponsor This Important N-of-1 Research Project
Jessica Block – My Health Story
My name is Jessica Block and I am an environmental research scientist at UC San Diego. I have been living with extensive musculoskeletal pain for 24 years For the last 11 years, I have struggled to walk, sit, stand, and sleep due to a severe injury to my low back. I would say that for the last 11 years, I have been trying to find ways to heal, but for the first few years of this time, I was just trying to understand what was wrong. I was exhausted. Always. And I didn’t know why.
At the time, I was working for Dr. Larry Smarr at UCSD, and he was just embarking on his own medical self-quantification. As he was describing tracking his sleep cycles with his Zeo (a sleep monitoring device cutting-edge at the time), I realized that I must not be sleeping. So, Larry bought me a Zeo. In the several months that I used it, the Zeo never tracked a deep sleep cycle. In other words, I was unconscious, but not sleeping. It took years before I figured out that I was sleeping in pain. Slowly, I discovered the mechanisms of my back injury, and that my long-term pain was due to being on the spectrum of hypermobility, a genetically influenced (heritable) condition.
I sought help, mostly in the form of musculoskeletal treatments like physical therapy and massage. When those were not enough, I added osteopathy and dynamic neuromuscular stabilization (as well as pain medicine, muscle relaxers, essential oils, acupuncture, meditation, and much more).
I found incredible health care providers that helped me experience less pain. Working collaboratively with open-minded physicians and scientists is the way for me to find a way back to health. Regenerative medicine techniques have helped my recovery. I have undergone several rounds of platelet-rich plasma injections, each of which helped curb severe pain and increase function for about a year. However, in the last few years, my condition has gotten significantly worse.
Through my journey, I joined Project Apollo – a patient group whose mission is to transform healthcare through data-driven, patient-centered processes, working in collaborative communities. In Project Apollo, we strive to discover solutions to our not-so-well-understood diseases and to show by example how patients can, and must, be active participants and co-investigators in their healing process.
There is very little known about hypermobility and few treatment modalities even address it. Through my own investigations, I diagnosed my hypermobility and identified characteristics of my symptoms that reveal how I became injured. This helped me understand why most medical treatments and therapies have not been enough to recover.
I am taking the next step in regenerative medicine treatment – stem cell injections to my right hip, right SI joint, and lower back. My medical team and I are designing an N-of-1 study around this intervention that will help me and others understand the treatment. The pre-hab, procedure and rehab will cost $15,000. Insurance does not cover my treatments. That is why I am asking for your help to fund this study.
This funding will cover the costs of treatment and create the data that will inform my N-of-1 research. The project is directed by DeAunne Denmark, MD, PhD, an expert in precision medicine. The results of this research will become a case study focused on hypermobility and associated complications, and the effects of this intervention on my condition. Our longer-term goal is to create a framework for N-of-1 research, where the future of medicine involves the insights of the patient.
My n-of-1 case study could have significant implications for large patient populations suffering from chronic pain and chronic fatigue. It is my hope that biomedical researchers, here in San Diego and beyond, are seeking intellectual data-oriented patient partners. There is a lot to learn from my self-quantification journey and I’ve got a medical dream team to get me through it. Join us!
Project Apollo, through their 501c3 nonprofit – Precision Healthcare Ecosystem – has agreed to host my fundraising for this treatment.
What Is Next?
This intervention is not the end of my story. I expect to feel better and become stable enough to become stronger and more resilient. There is much more to be learned about my condition and how it affects me and others like me. I look forward to talking with you about my investigation and showcasing what my medical dream team has to offer the future of medicine.
Want to talk about it?
Please contact me at JLBLOCK@gmail.com