CRPS and CIDP Slowed But Didn’t Stop This Medical Career

CRPS and CIDP Slowed But Didn’t Stop This Medical Career

By Sherrie Negrea—Rutgers University Special to the National Pain Report

Jill Konowich was in the middle of working on her M.D./Ph.D at Rutgers New Jersey Medical School (NJMS) when extreme pain started shooting up her right leg. She had been training for a half marathon with her fiancé, and suddenly, she couldn’t even walk.

Within two weeks of getting married on September 27, 2013, Konowich was in a wheelchair.It would take six months before she received a diagnosis for her condition – complex regional pain syndrome (CRPS), an autoimmune disease that causes such excruciating pain that it is ranked worse than childbirth, amputation and cancer.

“It just started taking over my body very quickly,” says Konowich, who took a yearlong medical leave of absence from school. “I couldn’t shower. I couldn’t move.”

Despite the debilitating pain, Konowich never gave up on her medical career. “I had moments where I tried to imagine what else I could do with my life, but I really didn’t want to do anything else,” she says. “This is what I’ve always wanted to do.”

After seeing Daniel Richman at the Hospital for Special Surgery in New York and starting infusion treatment, Konowich was able to defend her dissertation and return to medical school. Yet because she was still struggling, Richman, a 1986 NJMS graduate, suspected something else was wrong and sent her to a neurologist.

In 2016, she was diagnosed with Lyme disease and chronic inflammatory demyelinating polyneuropathy (CIDP), a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms.

Although she continued to battle painful health conditions that forced her to take a second medical leave for treatment, Konowich persisted in finishing her degree – 12 years after she began. On May 20, she received her diploma at the Rutgers New Jersey Medical School convocation at the New Jersey Performing Arts Center in Newark.

“She’s a very determined person and very hardworking, and that helped her overcome her illness,” says Padmini Salgame, a professor in the Center of Emerging Pathogens at the medical school and Konowich’s doctoral thesis advisor. “Anybody else in her place would have given up, but that’s not Jill.”

“If you’ve never experienced illness firsthand, then it’s difficult to fully comprehend what it’s like to be in a patient’s shoes.” – Jill Konowich

What made the fight against her two illnesses so difficult was that Konowich had been a star athlete. She was captain of the tennis team for four years at the Massachusetts Institute of Technology, where she majored in biology and literature. And she was also a marathon runner training to compete in an Iron Man triathlon before becoming ill.

Yet her dream since growing up in Little Silver, N.J., was to become a doctor. Beyond practicing medicine, Konowich also wanted to understand the science underlying disease, which led her to embark on an M.D./Ph.D program.

While working on her dissertation, Konowich coauthored two papers with Salgame and other graduate students on the role of the protein known as the toll-like receptor 2 in regulating immunity to tuberculosis. The research required spending long hours in the lab, a schedule Konowich tried to maintain while battling her illnesses.

After her diagnosis, however, Konowich realized that she needed to take better care of herself and rely on mindfulness to reduce her pain and pace herself with her work.

“It’s really hard to do as a doctor, but it’s really important for people with autoimmune diseases,” she says. “You have to be smart and take care of yourself so you can take care of other people.”

Beyond the support of her husband, Konowich credits her father, Joseph Konowich, a retired associate dean for Rutgers School of Dental Medicine, with helping her complete her degree.

“He was a big part of what got me through the illness,” she says. “He would drive me to work, wheel me in my wheelchair, and pick me up. A lot of what I got done was my motivation – plus I was lucky to have a strong support system.”

Next fall, Konowich will start an internship in internal medicine at Overlook Medical Center in Summit. Then she will begin an advanced four-year residency in radiation oncology at Rutgers Robert Wood Johnson Medical School.

Konowich believes that fighting two diseases has given her a unique outlook in treating patients and has profoundly deepened her empathy for patients under her care.

“What it really changed was my perspective and approach about how to delicately deliver bad news, how to thoughtfully answer questions from patients who are getting these diagnoses, and how a diagnosis can uproot a patient’s world,” she says. “If you’ve never experienced illness firsthand, then it’s difficult to fully comprehend what it’s like to be in a patient’s shoes.”

Featured image: Jill Konowich

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Authored by: Sherrie Negrea

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David Overmyer

I had been diagnosed with CRPS/RSD and have just been diagnosed with CIDP. Are there any resources to deal with both at the same time?

dave

I admire Jills accomplishment. Its inspiring and proof that pain doesnt define people.

Cheri Furr

Bravo to you, and thank God for your father! As a CRPS sufferer myself who also has severe bone on bone arthritis in my shoulder socket, arthritis down my neck and entire spine, as well as both knees, I feel like you have to be a much better doctor than most. You can’t help but be empathetic, not dismissive, and go all out for your patients. You will not accuse a patient of making up their symptoms, or tell them their pain is “all in their head.” As a woman, you will also understand that a lot of women are under treated and accused of this more than men. Good luck to you!

Walter Strickland

Thanks for the good work and the good info.Will be a miracle to be able to get the relief from this nawing pain that never stops unless I take pain meds and do the light therapy on my Cervical spine.Hoping myself and millions of other COP’s will be able to get proper relief soon so we can at least have a better quality of life soon.

FST

First may I congratulate Dr. Negrea on her hard-earned accomplishments! Her story is like an extreme type of shot in the arm to pick us up and help us go on when we are ready to throw in the towel.

Though I am at an age when I have more days behind me than ahead of me, I want to be able to live those days “like a boss” and that, to me, means having my pain managed to the level acceptable to me. There is a dissonance there, because what is acceptable to me is not what the government will mandate. I read the policy makers’ version so far. It’s no where near going to be helpful; in fact will put undue stresses on the chronic pain patient.

I would be very, very surprised if I’m wrong.

Dave

Hi To all the Chronic pain suffers out there.
I have herniated bulging disks in my L4 L5 and Arthritis, my L5 is getting worse. I was waking
up at 3AM every day with restless leg sin drum and pain that was so bad that i was almost in tears the only thing that pain Management did for me was put me on was inflammatory’s and
5MG ox-condone what a JOKE I was on 15MG ox-condone four times a day but they thought that was to much. I Finley went to a chiropractor and he was able to stop my 3AM episodes.
Time to move on to the next pain management place.

Notasheep

She is one helluva woman and a shining example of iron willed determination. I don’t know what else to say!

Terry Ott

Thanks for the great and inspiring story. And here’s to a long and successful career … but that’s guaranteed because of such an indomitable attitude and resourcefulness.

Peter Stanford

I had a horrific auto accident which left me with a Brachial plexus injury to my right arm. My right leg was almost completely severed. My left metatarsals were fractured. I am still recovering in a nursing home from those for eight months now. Before the collision I suffered from chronic pain from scoliokyphosis, degenerative disk disease, and spinal stenosis. I have an implanted directed medicine pump to a completely different source of pain. I also have an implanted neurostimulator to
aid in neuropathy in my legs caused by my back. My reason for telling all this is to offer help. I have discovered the Hospital for Special Surgeries, hss.edu, which amongst other locations are located in Stamford, CT. If you need help with pain and you are having your medications reduced or completely withheld, you may get a great deal of help there. Their main phone number is (212)606-1000 (NY). Also (203)
705-2400 (Stamford,CT). I will attempt to return here with more information. I can say that one of the two founders of HSS is Dr. Wolfe, known to be the #1 orthopedic surgeons in the USA. Dr.Wolfe’s
website is at scottwolfemd.com. To make appointments the email address is (212)-606-1529. If you would be interested in watching an actual repair of a nerve, you can click on the YouTube link on Dr.Wolfe’s website. Yes, he actually made a video of one of his operations. For myself, it was a find of a lifetime. I may yet have my Brachial plexus injury repaired. I had resigned myself to loss of the arm. Good Luck to ALL of you!