HomeUnstoppable!Unstoppable: How Kelly Owens of The Feinstein Institutes Has Made Incredible Accomplishments...

Unstoppable: How Kelly Owens of The Feinstein Institutes Has Made Incredible Accomplishments Despite Battling Crohn’s Disease

Your disease or disability is undeniably a part of you; I know that I wouldn’t be who I am without how Crohn’s disease and inflammatory arthritis impacted not only my physical self but my perception of the world around me. However, it’s essential to recognize that while it is a part of you, it’s not all of you. I am not just a person with inflammatory diseases. I decided early on that my diseases were not going to be the only thing that painted my identity; if anything, I’d only let it strengthen the other parts of me.

As a part of our “Unstoppable” series, I had the pleasure of interviewing Kelly Owens.

Kelly Owens is the director of education and outreach at the Feinstein Institutes for Medical Research. After fifteen years of active Crohn’s disease and inflammatory arthritis, and failing almost two dozen medications, she and her husband moved to Amsterdam in 2017 for six months to participate in a revolutionary clinical trial run by SetPoint Medical using vagus nerve stimulation, a part of the emerging field of bioelectronic medicine. Within two months, she was deemed in clinical remission. Nowadays, she works at the Feinstein Institutes for Medical Research alongside Dr. Kevin Tracey, the founder of bioelectronic medicine. Her mission is to expand access to more patients suffering from inflammatory diseases and advance research.

Patients who are interested in learning more about bioelectronic medicine should email Kelly at kowens4@northwell.edu. She can share a variety of resources to learn about the science, clinical trials so far, and can add patients to the Feinstein Institutes’ patient database to be contacted for future trials.

Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?

Thanks so much for allowing me to share my story! I was diagnosed with Crohn’s disease and inflammatory arthritis in 2002, when I was 13 years old, after an ankle sprain. In the 15 years that followed, I dealt with colitis flares that left me doubled over in pain, dehydrated, and malnourished. Inflammatory arthritis spread from my ankle to every joint in my body, and I ended up with two skin ulcers on my legs that took 18 months to heal. I was prescribed twenty-two different biologics and immunosuppressants, all of which failed, leaving me battling active disease from the time I was thirteen until I was twenty-eight. I was hospitalized half a dozen times. Sometimes I needed a cane; after long periods of immobility, I needed a walker to regain balance, and at my worst, I relied on a wheelchair.

I first learned about this new science of bioelectronic medicine and vagus nerve stimulation in 2014 after seeing an interview in the Huffington Post with Dr. Kevin Tracey, president, and CEO of the Feinstein Institutes for Medical Research, and founding father of the field of bioelectronic medicine. Dr. Tracey was talking about this tiny device that uses electrons to treat inflammatory diseases. At the time, he shared that it was going to be tested in rheumatoid arthritis. I immediately knew that it would help me, too — it seemed to me that while drugs negotiated with the body, vagus nerve stimulation seemed to command it. However, a clinical trial didn’t become available for Crohn’s until 2017. By then, my health had further deteriorated when my husband and I learned that the trial was taking place in the Netherlands; we sold everything that wasn’t nailed to the floor and spent six months abroad. On June 22nd, 2017, a small electrode was implanted in my neck, wrapped around my vagus nerve. Powered by a small magnet, the implant stimulates my vagus nerve, turning off the overproduction of inflammation in the immune system. Within days, my pain decreased significantly, and within weeks, my joint swelling did as well. Two months later, I was deemed in clinical remission for the first time since my diagnosis, nearly sixteen years prior.

Do you feel comfortable sharing with us the story surrounding how you became ill? What mental shift did you make to not let that “stop you”?

I grew up in the mountains of northwestern New Jersey; I was an athlete and a country girl. I spent my days with my friends on the basketball court and playing softball, field hockey, and track and field. The summer I became ill, I was a tap-dancer in a community theater production of The Music Man when I twisted my ankle while practicing one day. In days that followed, the swelling only seemed to get worse, and within weeks, I began to experience gastrointestinal symptoms that had me in the bathroom multiple times per day. Soon, I was diagnosed with Crohn’s disease with extra-intestinal manifestations of inflammatory arthritis. At only 13, I went from being an athlete to overnight, feeling like an 80-year-old woman.

My diagnosis news struck hard, as it came on the heels of some complicated personal and family matters over the past few years. My uncle, who had been like a second father to me, was battling stage four brain cancer. We all lived on the same plot of land as the ‘family farm,’ and his illness impacted us differently. There has been significant research showing the correlation between chronic stress and inflammatory diseases. According to a study published in the Journal for American Medicine, those with a stress-related disorder were 36% more likely to have an autoimmune disease. Those with PTSD were 46% more likely. The body’s fight-or-flight mechanism goes into overdrive, damaging the cells and allowing mitochondria — the energy powerhouse of a cell — to leak into the bloodstream, invoking an inflammatory response from the immune system.

By the time I was diagnosed, only a month or so of my first symptoms, my digestive tract was covered with hundreds of ulcers. As we advance in the 21st century, it is about time that we start taking the brain-body connection seriously and understand that the vagus nerve is the communication highway between the two.

The thing I had on my side with my diagnosis was innate stubbornness. Undoubtedly, there were days of sorrow and despair, but a refusal to accept the status quo has lifted me out of those darker days. The disease wasn’t something foreign in our family; with my uncle’s brain cancer, my dad’s type 1 diabetes, my grandmother’s lupus, and more, I watched my role models live their lives fully despite their odds, and they passed their grit onto me.

Can you tell our readers about the accomplishments you have been able to make despite your illness?

Before vagus nerve stimulation, I was still as relentless as I am today — just in a lot of pain all the time. Despite my diseases, I managed to graduate magna cum laude with a major in English literature and secondary education and a minor in special education. I often went to get Remicade treatments in the mornings, and my husband or parents would drive me to class after.

I managed to teach high school English to some of the most incredible kids on the planet. On days when my legs couldn’t hold me up, I’d sit on my desk and teach them from there. I wrote a novel, a work of fiction with each chapter from the perspective of a different character (still, after nearly a decade, not good enough for me, though).

I married my best friend and high school sweetheart, and even when illness and adversity tried to take the brush away from us, we managed to paint a pretty remarkable and adventurous life together — and continue to. Throughout everything my body has been through in almost twenty years, I consider myself the world’s luckiest woman.

Early on, it was evident that we don’t know how much time we get on this earth, so we better make the time we have count, and I think so far. Regardless of our circumstances, we can always seek purpose. We all need a reason to put our boots on in the morning, and sometimes, we have to do the work to forge meaning for ourselves.

What advice would you give to other people who have disabilities or limitations?

Your disease or disability is undeniably a part of you; I know that I wouldn’t be who I am without how Crohn’s disease and inflammatory arthritis impacted not only my physical self but my perception of the world around me. However, it’s essential to recognize that while it is a part of you, it’s not all of you. I am not just a person with inflammatory diseases. I decided early on that my diseases were not going to be the only thing that painted my identity; if anything, I’d only let it strengthen the other parts of me.

There were times I had to give up things that I loved because I couldn’t do them, but then I found new things I could do. I had to give up my job as a teacher, so that year, I created a class online for Romantic and Victorian poetry for adults, which I taught for a few hours a week from my bed. I signed up for an online writing class that I could do at my own pace. When we lived near the beach, I decided that I could either lay in bed and feel like hell, or I could go lay on the beach and still feel like hell. So, I decided to go feel like hell on the beach and at least enjoy the view.

There are always ways to find a shred of identity outside of disease and disability, which kept me moving forward when despair would’ve preferred that I didn’t. For me, literature, art, cinema, music, nature, and most importantly, love, gave me something worth living for. Find whatever it is that makes life worth living and do as much of it as possible.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

Well, there are a few — and I wish I had the space to name each of them because I wouldn’t be who I am without them. They know who they are and how much I love them.

However, to pick one, who I hold so dearly, who changed the trajectory of my entire existence: once upon a time, this guy named Dr. Kevin Tracey came along and realized that the world had some room for significant improvement. In the last thirty years, his research has transformed medicine as we know it.

His research in molecular science and monoclonal anti-TNF led to the discovery that the root cause of disease is inflammation. This finding eventually led to another discovery, the vagus nerve ‘the inflammatory reflex’ and the realization that by electrically stimulating the vagus nerve, the overproduction of inflammation could be effectively turned off in the immune system — without side effects, like what happened to me.

Dr. Tracey’s life’s work transformed my entire existence, and someday, sooner than later, millions of more people with inflammatory diseases will be able to attribute their recovery to the man who, as a little kid, once told his grandpa that there’s gotta be a better way to treat disease; so he did it himself.

Today, the cane that my dad gave to me when I was nineteen sits in Dr. Tracey’s office and has been there for three nearly years, because I no longer need it, and I never will again. Something tells me that someday, he’s going to need a storage container for all of the canes people will send him.

How have you used your success to bring goodness to the world?

I hope that the work we are doing today will bring a lot of good for the world tomorrow. In my role at the Feinstein Institutes for Medical Research, alongside Dr. Tracey and our incredible team of movers and shakers, I am focused on expanding access to bioelectronic medicine therapies to more patients. Over the last three years, I have spoken to over a thousand patients about bioelectronic medicine. I have built a database of patients who are eagerly awaiting access to this therapy. I’ve built relationships with patients across various diseases from Crohn’s, arthritis, multiple sclerosis, and more. They reach out regularly, asking when a trial will be available for them or how they can pursue ‘Right to Try’ or ‘Compassionate Use.’ Both of those pieces of legislation have great intentions, but they often don’t work in real life. People are desperate. Current treatment options available are failing them, and they deserve so much more.

We face hurdles in deploying and translating this research from bench to bedside, but we will get there.

Patients are going to begin to lose patience with all of the red tape and bureaucratic nonsense that prevents them from accessing a treatment that has been proven to be both safer and more effective than the drugs available to them now that are failing them.

If the status quo were working so well, we wouldn’t need pharmaceutical companies selling drugs on TV commercials. When is the last time you saw a commercial for an antibiotic? You don’t need one. If you get sick, you get an antibiotic. They don’t need a 30-second ad to remind you to get it.

Can you share “5 things I wish people understood or knew about people with physical limitations” and why.

  1. People with diseases or disabilities generally hate the ‘sympathy’ look. Empathy helps more — acknowledge with us that the current situation sucks.
  2. People with diseases or disabilities don’t always want to talk about how they feel. Sometimes, they just want to be present with you and not think about their illness.
  3. Having said that, presents are always welcome.
  4. People with diseases and disabilities generally know more about their body than you do — including the doctors treating them. Doctors may have taken courses in immunology, etc., but the patient has spent most of their existence living with the disease that the doctor just read about. Listen to patients. The “doctor within” them can usually judge what the right treatment plan is for them and whether it’s working or not.
  5. Speaking of which, people with diseases and disabilities get tired of being pin cushions. Do what you both agree is necessary, but don’t make them soul-tired with overdoing just for the sake of doing. Ask: is it necessary? Is it going to improve the quality of life? Remember, the brain-body connection matters. If you make a person feel like a patient, there’s a pretty good chance that they will be a patient for a much longer time.

Can you please give us your favorite “Life Lesson Quote”?

Those who know me best know that the classic ‘Kelly’ answer to an inspiring life quote is one by William Blake: “We are put on earth a little space that we may learn to bear the beams of love.”

Though our type and level of adversity vary depending on our circumstances, none of us get through life unscathed. None of us make it out of here without some heartbreak. However, we do have a choice in how we handle the cards we’ve been dealt. We can let adversity harden us and make us bitter, or we can allow it to make us more tender and loving. It’s easy to be bitter, but to bear the beams of love is an ongoing practice. It requires ongoing forgiveness and reflection, and if by bearing that love, we ease one person’s pain, even temporarily, our entire existence — including the really painful parts — has been worthwhile.

We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂

I’m a born and bred Jersey Girl, so hands-down Bruce Springsteen. Bruce’s songs are short stories, and his albums are each a work of literary masterpiece. If you follow Bruce’s albums starting with ‘Greetings from Asbury Park’ through his latest ‘Western Stars,’ you’ll see that his music is a progression of the human spirit growing through the different eras of life, as we go from the hungry and hopeful ‘Growing Up’ to the reflections of ‘Western Stars.’

His words satisfy the craving I have for words and the awe I feel when I see words organized so effectively that they not only tell the story but also invoke the senses and pull at the heart’s strings. Bruce has this ability to step into the shoes of the common-man and tell their story with both vulnerability and dignity. As we move further into the 21st century of tech and automation, many of these common voices are being displaced and demeaned. The price of progress isn’t supposed to be human dignity, and I’m so drawn to Bruce because of his ability to empathize and encapsulate these stories.

Though I am only 31, my life experience has differed from many of my same-age peers, and my soul feels three-times my age because of it. I’ve done a lot of living despite my circumstances, and I’ve done a lot of reflecting, and Bruce’s music seems always to capture what I’ve found to be true. Through his lyrics and his albums’ progression, he has taught me that maybe the point isn’t to live one lifetime, but a series of lifetimes within the vast eras that we experience in the one life we have. To accept what comes with grace, but to be relentless in chasing what else could be. Breakfast with Bruce would be epic. Good thing vagus nerve stimulation modulates heart rate variability.