A rare journey inside a COVID-19 world

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.

The loss of hope and that feeling nobody is listening when you are screaming out for help came roaring back for Marni. It was a road she had been down before when she was originally diagnosed in 2016, and didn’t think it was a bridge she would have to cross again.

“That anger and frustration I felt. I pulled away from everyone and I got depressed is the best way of putting it,” she said. “I felt like at times I might as well just crawl in a hole and be done with all this fighting that I’ve been doing. It changed how I view myself. I realized I’m not as over things in terms of my diagnosis and my progress as maybe I thought I was. I really honestly thought I was over it and had moved on and was this bad ass advocate. I’m definitely not.

“I’m still questioning my place. I’m still mourning my old life. And going forward, I’ve wondered what is my value or worth. I think this pandemic brought out some of the best and some of the absolute worst in us as individuals and as a society.”

As she and John started to pick up the pieces and once again focused on what was required to keep moving forward, Marni discovered going back to her roots as a rare disease patient would play a pivotal role.

“This is our world every day. We are screaming at the top of our lungs all the time about needing more help. The mental health side of this is very real for patients and this has made something difficult already even tougher.”

Marni Cartelli

A chatterbox and outgoing person by nature, Marni found a level of support, inspiration and hope back in 2016 by interacting with other patients with shared experiences inside the Rare Disease Community. Those relationships and friendships fueled her passion.

Marni knew, though, she needed another shot of hope and inspiration to keep battling and fighting. Her passion flame needed another light from the match.

She found it. Only this time it centered around sports – particularly her love of football.

Marni first came in contact with Uplifting Athletes in 2017 at the Global Genes Patient Advocacy Conference. She overheard the team from Uplifting Athletes at the conference talking about football during lunch. Marni is a huge NFL fan and loves her New York Giants. So hearing football talk had her full attention. She had no idea who or what Uplifting Athletes was. But she knew if people were talking football, she wanted to join the conversation.

That was the roots of a blossoming patient-focused relationship using football as the common bond to forge a kinship centered on Uplifting Athletes’ mission and vision colliding to help inspire hope in a patient.

While watching her beloved New York Giants during the NFL My Cause, My Cleats campaign in 2018, she took notice that Giants Punter Riley Dixon was wearing Uplifting Athletes cleats in support of the Rare Disease Community.

Marni avidly supported the New York Giants for many years but this time, after seeing Riley’s cleats, she felt that the players were supporting her. Marni formed an instant bond with Dixon, an Uplifting Ambassador and former Syracuse punter. Since that game, Marni has worn her Riley Dixon No. 9 Giants jersey with pride to her infusions. 

The fact a group of athletes under the Uplifting Athletes umbrella cares is a source of great inspiration to Marni. She can feel their support and that impacts her.  It also ignites her fire to try and connect the patients in her circle closer with Uplifting Athletes so they know it, too.

“This is about the mental health and well being of the people who make up this community. The medical side of this pandemic presents a whole different set of challenges and obstacles. Those types of challenges we are used to coming together to overcome,” Marni said. “There’s a lot of anger in the rare and chronic community against society because society is acting like what they are going through is difficult.

“This is our world every day. We are screaming at the top of our lungs all the time about needing more help. The mental health side of this is very real for patients and this has made something difficult already even tougher.”

Inspired to move forward, and drawing on the lessons she learned during her dark days in lockdown during the pandemic, Marni is back sharing her fiery passion with others in the Rare Disease Community.

“One of the biggest lessons I’ve learned through all of this is I realized being an advocate is not about everybody else, it’s about me,” she said. “I used to think it was not about me. But I realized in order to help others, I had to take care of me. What happens to me has to mean something to me. I have to continue to fight for empathy for me and everybody else, too. Our community needs help.”

In an effort to introduce more rare disease patients to Uplifting Athletes’ mission, Marni formed a team for the upcoming Uplifting Athletes 7,000 Mile Challenge. Team Passionately Rare already has more than 40 members and Marni welcomes anybody inspired to support the rare disease cause to join her team and be a part of the 7,000 Mile Challenge. 

2 thoughts on “A rare journey inside a COVID-19 world

  1. Great article, thanks so much !! All of your information is spot on, & this is a great story to Advocate for both yourself & the Rare Disease/ RSD/CRPS Community ! 🥰

  2. Love the article. I can’t walk more than 10 feet. Not can I sit in a wheelchair. How can I possibly run a team?

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