A rare journey inside a COVID-19 world: Part 1

Spend more than five minutes with Marni Cartelli and there is no possible way to miss her passion. She proudly wears it on her sleeve.

What drives her passion is a will and commitment to battle a difficult and complex rare disease that makes a day without pain nearly impossible.

Marni was diagnosed with Complex Regional Pain Syndrome (CRPS) (formerly called Reflex Sympathetic Dystrophy) in 2016. CRPS is a disorder in which pain, occurring spontaneously or from a sensory stimulus, is disproportionately far more exaggerated than it should be. 

“Treating rare and medically complex cases like mine takes multimodal approaches. Remove one piece of the puzzle and the care patients receive results in suboptimal outcomes,” said Marni, a former medical worker who suffered a shoulder injury in 2015 that spurred her rare diagnosis less than a year later.

Marni possesses bull-like determination to endure anything and everything in order to keep pushing forward. She has a loving and supportive husband, John, and an outstanding team of doctors she trusts.

Despite all those assets in her toolkit, Marni admits the last several months have been some of the toughest and most difficult during her half-decade rare journey.

Following a physically grueling, but emotionally rewarding, two-week stretch on the road doing rare disease advocacy work, Marni knew her body was going to be wiped out. But, she also knew her critical bi-annual regimen of six weeks of infusion therapy was on deck and that would provide the physical relief she needed.

Marni and John live on Long Island. When New York went into COVID-19 lockdown the third week of March, her six-week infusion treatment schedule evaporated. Her body continued to struggle without the treatment, and there was nothing Marni or her doctors could do.

“It was a difficult decision. You had to weigh the public health part of it when the lockdown happened,” said Dr. Edward S. Rubin, the acute and chronic pain management doctor who is part of Marni’s medical team. “After six or seven weeks people were in such distress, I opened up (treatment) for one person at a time. I would spend six or seven hours on a Saturday doing one person.”

Dr. Rubin brought Marni in for treatments on back-to-back weekends in late April. He offered to do more, but the other shoe dropped and Marni had to refuse additional treatments.  Marni and husband John came face-to-face with another reality many rare disease families confront – financial struggles and hardship.

John’s main source of revenue dried up when the entire state of New York court system shut down. He’s an attorney with his own practice so his main source of income evaporated. And when Dr. Rubin offered another round of infusion treatments, the reality was the Cartelli’s couldn’t afford it.

“I feel so much guilt with the financial side of it. John is our income. I get some disability but it’s not much. The financial side of it always weighs heavily on me,” Marni said. “He felt terrible about what was going on, he was watching me deteriorate and struggle. He was willing, if it came to it, to deliver Uber Eats to make some extra money so I could get another treatment.

“My guilt was off the charts. I got the two treatments and I stabilized enough that I figured I could ride it out. It’s torture because I know the money is not there and I also know I’m headed back over that edge. I’m up at night.  I’m shaking.  My body is breaking down. John is feeding me. It was a dark place.”

She went into a physical and mental free fall she never saw coming. It led her to places she thought were well behind her on her rare disease journey. The end result was several dark and difficult months in lock down.

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