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Aug. 20, 2023

Race Against Time: A Woman’s Fight to Survive Primary Sclerosing Cholangitis

Race Against Time: A Woman’s Fight to Survive Primary Sclerosing Cholangitis

Race Against Time: A Woman’s Fight to Survive Primary Sclerosing Cholangitis

Molly was only 9 years old when she was diagnosed with primary sclerosing cholangitis (PSC), a rare progressive liver disease. Now 29, her condition is rapidly declining and she urgently needs a liver transplant to live.

On a recent episode of The Medical Maze podcast, Molly shared her incredible story of navigating life with PSC for the past 20 years. She described her challenging symptoms, the transplant process, and the race against time to find a matching living liver donor.

What is Primary Sclerosing Cholangitis?

PSC causes inflammation and scarring of the bile ducts inside and outside the liver. This blocks the flow of bile, leading to irreversible liver damage. PSC affects just 1 in 10,000 people, usually diagnosed between ages 30-40.

Symptoms include fatigue, itching, jaundice, vitamin deficiencies, and cognitive issues as toxins build up. Molly manages problems like portal hypertension and hepatic encephalopathy. Without a transplant, PSC is fatal.

A Shocking Adolescent Diagnosis

Molly was diagnosed with PSC at 9 while also coping with Crohn’s disease. She didn’t fully grasp the gravity at the time. Now 29, married, and working full-time, Molly is rapidly declining. Just months ago, she was stunned to learn she has end-stage cirrhosis.

Her doctor says she likely only has 1-2 years left and desperately needs a liver transplant. Yet the organ shortage makes finding a deceased donor match difficult, especially with PSC's unique challenges.

Searching for a Lifesaving Living Donor

Molly's only real chance is a living liver donation. These organ heroes can donate part of their liver, an organ that regenerates in just 6-8 weeks! She is listed at two transplant centers and urgently searching for a matching blood type O donor age 18-60.

Living donation gives PSC patients transplants before it’s too late and their health deteriorates. Molly dreams of traveling again, advocating for rare diseases, and helping animals in her vet tech career after transplant.

Learn more about becoming a living liver donor for Molly or someone in need: https://www.hopkinsmedicine.org/transplant/programs/liver/living-donor/

 

WATCH MOLLY'S EPISODE HERE

#LiverTransplant #LivingDonor #RareDisease #MedicalMaze #PrimarySclerosingCholangitis

Don-Ellen Ray Profile Photo

Don-Ellen Ray

Host

Don-Ellen Ray, an extraordinary single mother who has charted a path from the corporate world to becoming a beacon of hope and knowledge. Her personal journey through the twists and turns of misdiagnosis led her to the discovery of a life-altering condition: Lipedema.

Don-Ellen's relentless pursuit of answers began when she experienced excruciating leg pain, accompanied by an unsettling transformation in their appearance. Her legs seemed more like stumps, and unexplained bruising dotted her skin. Overwhelmed by chronic fatigue, even the simplest daily tasks became a Herculean effort. It was during her extensive search for answers that she unraveled the enigma of Lipedema.

Driven by the realization that others must be enduring similar struggles, Don-Ellen's vision for this podcast was born. With unwavering determination, she aims to share her own journey while amplifying the stories of countless individuals who have faced misdiagnosis and rare conditions. This platform will serve as an invaluable resource, providing education, information, and much-needed awareness about Lipedema and other misunderstood and rare conditions.

Don-Ellen's mission transcends mere awareness. She seeks to create unity, a space where those walking a similar path can find solace, support, and companionship. Together, we will embark on a transformative journey of information, compassion, and unwavering solidarity.

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