When my daughter was diagnosed with chronic Lyme disease in 2008, my wife and I were in for a rude awakening. We were living in a small Connecticut town, about an hour’s drive from Lyme, where the disease was discovered and given its popular name in the early 70s. Even in an area that should be a mecca for treatment – Connecticut residents report thousands of new cases every year – competent, effective care for our daughter ultimately seemed completely out of reach. Nearly 10 years later, my wife has become a consummate expert, advocate, and the living embodiment of the power of parents to fix health care.
In the spirit of full disclosure, I am an active part of the health care industry. I’ve built a career as a marketer across a variety of disciplines, but for the past four years I have worked within this system, and know all too well that patient perspectives time-over-time play no major role in determining policy and business decisions. Still, prior to my daughter’s diagnosis, I didn’t realize how rare it was to have meaningful support at the institutional level.
My daughter had complained of flu like symptoms, sharp pains, and fatigue, which resulted in repeated trips to multiple pediatricians who insisted that she would be fine. We were told it’s seasonal, it’s the flu, probably viral, and across the board, that there wasn’t much we could do about it. We asked our pediatrician about Lyme and they dismissed us, saying our daughter didn’t have a rash. Connecticut is one of 14 states that accounts for 95 percent of Lyme disease cases, and while many physicians here know how to identify acute symptoms, chronic Lyme is different.
Absent any helpful insight from the pediatricians we visited, my wife explored different avenues. She joined support groups in search of answers, and finally attended one where a speaker discussed Chronic Lyme. She realized then that my daughter had Lyme. My wife read books, watched a documentary (Under Our Skin), and we found a physician’s assistant who would give my daughter a Lyme test. The test came up positive, and she was diagnosed with Chronic Neuro-Lyme Disease.
Armed with newfound resources and emboldened by a clear diagnosis, my wife started making lists of parents whose children had recovered from the disease, looking for similarities in treatments and doctors treating the disease. Ultimately, she was able to gather a short list of doctors who seemed to keep rising to the top. Her persistence – researching, making calls, paying deposits – finally paid off and we were connected with a team of physicians who presented a potentially credible path to treatment.
There is no sure cure to chronic Lyme disease – everyone’s journey is different – but by leveraging antibiotics, practicing good nutrition, and exploring options outside of pharmaceuticals and traditional western medicine, gradual progress is possible. With time and persistence, symptoms can be made more manageable, but the chance for flares and ongoing issues are high, and managing the disease is a lifelong struggle for many.
It’s a long road, but we walk it together. I was also diagnosed with chronic Lyme in 2014, and sometimes keeping myself and my family healthy can feel like a full-time job; It’s something my wife has bravely and selflessly dedicated her own life to. But for as much as this has presented a significant challenge, it has also made me realize the critically important and commonly unrecognized role parents have in making health care work. In a maddeningly bureaucratic system, a parent won’t accept long delays, they won’t take “I don’t know,” for an answer, and they won’t put the future of their family solely in the hands of a single overworked professional with potentially limited scope. The one size fits all paradigm of medicine is quickly coming to an end. It’s becoming about the individual, their symptoms, needs and unique treatments, and moving away from “norms.”
Today, my wife is as close as a layperson can get to being an expert on the disease, and serves as a living resource for our family and for others in our community struggling to find answers. She’s a compassionate, inspiring advocate, and now blogger, but like many parents guiding their families through all kinds of medical crises, she also fills in the cracks in a system that frequently is unable (or unwilling) to help patients with inconvenient problems. There was nobody to correlate symptoms with a diagnosis, so she did research. There was nobody to refer us to the specialists we needed, so she hunted them down.
Inspired by my wife saving our family, and resolved to use my position for good, I started a project. My company, HealthSparq, is about helping real people make smarter health care choices. Our focus is exclusively on improving individual experiences within healthcare, so they gave me the opportunity to pursue a passion project focused on adding people’s voices into health care. Last year, What’s the Fix? launched as the first health care conference to give an exclusive platform to patients who’ve changed the system, instead of the usual industry talking heads. The response reinforced every impression from my own personal journey, and from attending one too many ineffectual industry events, myself: Patients are ready to be heard and the industry needs to listen.
In year one, some truly inspiring patients took the dais. We had a Type 1 Diabetic who hacked her own artificial pancreas and built it open source so anyone could access her work. We had parents who helped to treat their son’s seizures with cannabis, which was illegal in the US at the time (as of last week, an FDA panel approved the cannabis-derived CBD treatment). And we had moms, talking about how the collective wisdom of parents helped them to overcome challenges their children faced, more than any one health care professional could.
What’s the Fix? has since evolved from a project into a full-fledged movement, and parents continue to play a critical role. Bodo Hoenen, a presenter at our second annual event this May, will tell the story of his daughter Lorelei. After developing flu symptoms, Lorelei came home from school one day complaining of numbness in her arm, and hours later was admitted to the ICU. She was diagnosed with an incredibly rare condition that left her left arm completely paralyzed, and rather than leave her care to chance, Bodo and his wife researched day and night. They found a person living with a similar condition, whose recovery had benefitted from use of an exoskeleton, and the family built their own for Lorelei using YouTube tutorials and crowd sourcing of innovations.
Like our family, and many others facing challenging diagnoses, Bodo and Lorelei didn’t give up when they hit a systematic roadblock. They leaned in, became experts, and made the system work for their family. Parents around the country do this every day, and they’re our greatest untapped natural resource in the battle to fix health care. While some organizations have made encouraging progress towards more patient-focused care, it’s the indominable, unstoppable parents of this country that will lead our health care revolution. Just try to tell them it can’t be done, and you’ll see what I mean.
If you or someone you love is struggling with Lyme Disease, please visit Lymedisease.org for a list of physicians and other helpful resources.
