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 and 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 really 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 have found some incredible health care providers that helped me find a path to experiencing less pain. It turned out finding the right open-minded physicians were essential to collaboratively finding answers. Regenerative medicine techniques have shown great promise for 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. But in the last few years, my condition has gotten significantly worse.
Through my journey, I found 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 are striving 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 nearly no treatment modalities used to address it. Through my own investigations, I diagnosed my hypermobility and identified characteristics of my symptoms that reveal how I became injured and why the current state of medical treatments and therapies have not been enough to recover.
The Opportunity:
This month I am taking the next step in regenerative medicine treatment – stem cell injections to my right hip, right SI joint, and lower back. The pre-hab, procedure, and rehab will cost $15,000, and my medical team and I are designing an N-of-1 study around this intervention.
I am asking for your help to fund this study.
This funding will cover the costs of treatment (aka the data) that will inform my N-of-1 research directed by DeAunne Denmark, MD, PhD, an expert in precision medicine. The result of this research will be a case study investigating aspects of my hypermobility and associated complications, and the potential 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. I am asking for funding because I can’t afford my treatment, and because here in San Diego, biomedical research needs intellectual patient partners. My case study will have significant implications for very large patient populations of chronic pain and chronic fatigue. There is a lot to learn from my journey and I’ve got a medical dream team to get me though it. 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 hopefully become stable enough to get stronger and more resilient, but there is much more to be known about my condition and how it affects me and others like me. I look forward to talking with you more about my investigation and showcasing what my medical dream team has to offer the future of medicine. Please contact me to talk more at JLBLOCK@gmail.com
In health,
Jess
