Gilead Sciences: Living With a Rare Liver Disease: Maria's Journey
Maria Morais, a registered nurse, was diagnosed with primary biliary cholangitis (PBC) in 2018, a rare autoimmune liver disease affecting approximately 130,000 people in the United States. Her journey from diagnosis to liver transplant highlights the challenges faced by PBC patients. Despite initial treatment, Maria's condition progressed rapidly, causing severe symptoms like uncontrollable itching and fluid accumulation in her abdomen. By 2020, she required a liver transplant, receiving 60% of a liver from a friend. Post-transplant, Maria became a patient advocate and peer counselor for others with rare liver diseases. She emphasizes the need for more research and treatment options to address PBC symptoms like itching, fatigue, brain fog, and fluid build-up. Maria's story underscores the importance of awareness and continued efforts to improve the lives of those living with PBC.
Maria Morais, un'infermiera registrata, è stata diagnosticata con colangite biliare primaria (CBP) nel 2018, una rara malattia autoimmune del fegato che colpisce circa 130.000 persone negli Stati Uniti. Il suo percorso dalla diagnosi al trapianto di fegato mette in evidenza le sfide affrontate dai pazienti con CBP. Nonostante il trattamento iniziale, la condizione di Maria è degenerata rapidamente, causando sintomi gravi come prurito incontrollabile e accumulo di liquidi nell'addome. Nel 2020, ha avuto bisogno di un trapianto di fegato, ricevendo il 60% di un fegato da un amico. Dopo il trapianto, Maria è diventata una sostenitrice dei pazienti e consigliera tra pari per altri che soffrono di rare malattie epatiche. Sottolinea la necessità di una maggiore ricerca e opzioni di trattamento per affrontare sintomi della CBP come prurito, affaticamento, confusione mentale e accumulo di liquidi. La storia di Maria mette in evidenza l'importanza della consapevolezza e degli sforzi continui per migliorare la vita di coloro che vivono con la CBP.
Maria Morais, una enfermera registrada, fue diagnosticada con colangitis biliar primaria (CBP) en 2018, una rara enfermedad autoinmune del hígado que afecta a aproximadamente 130,000 personas en los Estados Unidos. Su trayectoria desde el diagnóstico hasta el trasplante de hígado resalta los desafíos que enfrentan los pacientes con CBP. A pesar del tratamiento inicial, la condición de Maria progresó rápidamente, causando síntomas severos como picazón incontrolable y acumulación de líquidos en su abdomen. Para 2020, necesitó un trasplante de hígado, recibiendo el 60% de un hígado de un amigo. Posteriormente al trasplante, Maria se convirtió en defensora de los pacientes y consejera entre pares para otros con enfermedades hepáticas raras. Ella enfatiza la necesidad de más investigación y opciones de tratamiento para abordar síntomas de la CBP como picazón, fatiga, confusión mental y acumulación de líquidos. La historia de Maria subraya la importancia de la concientización y los esfuerzos continuos para mejorar la vida de quienes viven con la CBP.
마리아 모라이스는 2018년에 원발성 담관염(PBC) 진단을 받은 등록 간호사로, 약 희귀 자가면역 간 질환으로 미국에서 약 130,000명이 영향을 받고 있습니다. 진단부터 간 이식까지의 과정은 PBC 환자들이 직면한 어려움을 조명합니다. 초기 치료에도 불구하고 마리아의 상태는 급격히 악화되어 조절할 수 없는 가려움증과 복부의 체액 축적 같은 심각한 증상을 초래했습니다. 2020년까지 그녀는 간 이식이 필요하게 되었고, 친구에게서 60%의 간을 받았습니다. 이식 후, 마리아는 희귀 간 질환을 가진 다른 환자들을 위한 환자 옹호자이자 동료 상담사가 되었습니다. 그녀는 가려움증, 피로, 뇌 안개, 체액 축적과 같은 PBC 증상에 대한 더 많은 연구와 치료 옵션의 필요성을 강조합니다. 마리아의 이야기는 PBC와 함께 사는 사람들의 삶을 개선하기 위한 인식과 지속적인 노력이 중요함을 강조합니다.
Maria Morais, une infirmière diplômée d'État, a été diagnostiquée avec une cholangite biliaire primaire (CBP) en 2018, une maladie hépatique auto-immune rare touchant environ 130 000 personnes aux États-Unis. Son parcours, allant du diagnostic à la transplantation hépatique, met en lumière les défis rencontrés par les patients atteints de CBP. Malgré un traitement initial, l'état de Maria a rapidement progressé, provoquant des symptômes graves tels que des démangeaisons incontrôlables et une accumulation de liquide dans son abdomen. En 2020, elle a eu besoin d'une transplantation hépatique, recevant 60 % d'un foie d'un ami. Après la transplantation, Maria est devenue défenseure des patients et conseillère entre pairs pour d'autres souffrant de maladies hépatiques rares. Elle souligne la nécessité de recherches et d'options de traitement supplémentaires pour faire face aux symptômes de la CBP, tels que les démangeaisons, la fatigue, la confusion mentale et l'accumulation de fluides. L'histoire de Maria souligne l'importance de la sensibilisation et des efforts continus pour améliorer la vie des personnes vivant avec la CBP.
Maria Morais, eine registrierte Krankenschwester, wurde 2018 mit primärer biliärer Cholangitis (PBC) diagnostiziert, einer seltenen autoimmunen Lebererkrankung, die etwa 130.000 Menschen in den Vereinigten Staaten betrifft. Ihr Weg von der Diagnose bis zur Lebertransplantation verdeutlicht die Herausforderungen, mit denen PBC-Patienten konfrontiert sind. Trotz der initialen Behandlung verschlechterte sich Marias Zustand schnell, was zu schweren Symptomen wie unkontrollierbarem Juckreiz und Flüssigkeitsansammlungen im Bauch führte. Im Jahr 2020 benötigte sie eine Lebertransplantation und erhielt 60 % einer Leber von einem Freund. Nach der Transplantation wurde Maria zu einer Patientenvertretung und Peer-Beraterin für andere mit seltenen Lebererkrankungen. Sie betont die Notwendigkeit von mehr Forschung und Behandlungsoptionen zur Linderung von PBC-Symptomen wie Juckreiz, Müdigkeit,
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NORTHAMPTON, MA / ACCESSWIRE / September 6, 2024 / In 2017, Maria Morais started to experience severe abdominal pain before eventually undergoing gall bladder surgery. When the procedure didn't bring her the relief she hoped for, follow-up tests showed her liver enzyme levels were abnormally high. Being a registered nurse, Maria knew something was wrong.
"I was also constantly tired. No matter how much I rested, it wasn't enough," she says.
Maria underwent many more medical tests until a fibroscan conducted in 2018 by a hepatologist revealed that she had a rare autoimmune liver disease called primary biliary cholangitis, or PBC. The National Institutes of Health estimates 130,000 people in the United States - primarily women - are living with this debilitating disease, which if left untreated can lead to chronic liver disease.
"Being diagnosed with PBC was a shocker," Maria said. "It was ironic, because as a nurse I focus on public health and the prevention of chronic disease."
At the time of her diagnosis, Maria's disease was classified as stage 1, but her liver damage progressed rapidly. Not only did she struggle with the uncontrollable itching that PBC can cause, but her immune system was attacking the lining of her bile ducts, causing inflammation and scarring. And as the damage to her liver became more severe, fluids accumulated in her abdomen and had to be drained at a medical facility each week.
"Often liver diseases can be invisible, but I was basically gaining and losing 20 pounds in fluid each week for months. It was like being pregnant over and over again," recalls Maria.
Between this and the incessant itching, she found herself isolating more and more because people would also wonder if what she had was contagious. Her symptoms slowly became too difficult to manage.
"I was beginning to wonder ‘Is this going to be my life?'" she recalls. "My son was 12 years old, and he would see me on the couch every night despondent and not engaging."
In Need of a Liver Transplant
By the end of 2020 Maria was referred for a liver transplant, and the next summer she received a portion of a liver from a friend who had lost her husband to colon cancer. The friend donated
"She gave me life," Maria says. She named the donated liver Lola and spent the next several months meditating and talking to it to encourage the new organ's growth and health.
Maria's journey from diagnosis to transplant and beyond transformed her into a patient advocate and peer counselor for other people with rare liver diseases. She talks about her "new
"There are big gaps in treatment options for people with PBC," says Maria. "We need medicines and research to stop the itch, the fatigue, the brain fog and the fluid build-up."
Until the gaps are filled and there's a cure for PBC, Maria says, she's going to continue to raise awareness of the disease and encourage people to "keep fighting the fight."
Originally published by Gilead Sciences
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FAQ
What is primary biliary cholangitis (PBC) and how many people does it affect in the US?
What were the main symptoms Maria Morais experienced with PBC?
When did Maria Morais receive a liver transplant for her PBC, and from whom?
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