My journey with PSC: Nicole Jockisch Carlos

Dec 3, 2018 | Ethan McConkey, Moderator | @ethanmcconkey

2018-09-11 Carlos Family

Primary Sclerosing Cholangitis (PSC) often strikes without a patient noticing any symptoms or signs of disease. For Nicole Jockisch Carlos, an Atlanta resident, this was the case.

Bloodwork ordered by her doctor in advance of a fitness competition revealed elevated liver enzymes. Although Carlos shared with her doctor that her father had been diagnosed with PSC, her disease remained challenging to diagnose. Several months would pass before doctors could definitively conclude the cause of Carlos’ abnormal bloodwork. After an endoscopic retrograde cholangiopancreatography, or ERCP test, revealed the potential presence of early-stage PSC, Carlos’ Atlanta-based doctor referred her to Mayo Clinic and Dr. Gregory Gores.

“From that point on it was a total shock, I thought I was healthy, I thought everything was good, and now I have this disease, it was a lot,” Carlos said. “When you have something such as that happen to you, it’s like your whole world turns upside down.”

After a year of wrestling with the diagnosis and speaking with Dr. Gores frequently, she decided that Mayo Clinic was where she would be followed for her medical care.

“I fell in love with Mayo Clinic, it’s like no other medical facility that you’ve been to,” Carlos said. “You just feel like people actually care for you and you are not some number.”

And then something else happened. “I turned my energy of feeling horrible to I can do so much more,” Carlos explained. “It’s such a rare disease, there’s not a whole lot of research funding for PSC, and the National Institutes of Health only gives so much.”

Carlos and her husband decided to use their personal experience with PSC as a vehicle for accomplishing something for the greater good. They established an endowment at Mayo Clinic to support new scientific initiatives for improving the pace and expand the scope of PSC research.

Having made their first pledge four years ago, the couple recently extended their commitment to support the Chris M. Carlos and Catharine Nicole Jockisch Carlos Endowment in PSC. Carlos said she believes that partnering with Drs. Gores, LaRusso, and Lazaridis will allow them to deliver impactful results for this disease.

“With that funding, they can accomplish more studies, test out-of-the-box high risk ideas, and make faster and bigger steps in the right direction to ultimately, cure PSC,” she said.

Carlos and her husband have also partnered with former Atlanta Hawks player, and current Brooklyn Nets player Demarre Carroll, who also lives with PSC, to raise thousands of dollars for PSC research through annual fundraising dinners.

“I want to find a cure for PSC or a therapy that slows down its progression” Carlos said. “My hope is with all this funding and the committed research team that does happen.”

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