2022年4月25日 · Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disorder that happens when part of your immune system attacks and damages your red blood cells and platelets. Left untreated, PNH can cause hemolytic anemia, chronic kidney disease or thrombosis (blood clots). Healthcare providers treat PNH with medication that prevents blood cell damage.

Whether you or a loved one is living with PNH, we’re here for you. Explore our site for support and resources to help you on your patient journey, every step of the way. Take a deep dive into PNH

2024年11月5日 · The Global PNH Patient Registry participants are 99% adults with 60% aged 18 to 50 and 39% aged 50 and older. 65% of participants are female and 11% affiliate with the LGBTQ+ community. 15% are Hispanic, 12% are Asian, 6 % are Black or African American and 77% are White. 69% of participants live in the United States.

陣發性夜間血紅素尿症（英語： paroxysmal nocturnal hemoglobinuria ，縮寫為PNH）是一種罕見、複雜且為後天造成的致命性血液 疾病 [3] ，被發現在19世紀，大約每百萬人會有一到二人罹患此疾病 [4] [5] ，而確診後5年內的存活率只有約65% [6] 。

2023年7月31日 · Paroxysmal nocturnal hemoglobinuria (PNH) is a rare disease that presents clinically with a variety of nonspecific symptoms. It causes complications mainly through intravascular hemolysis, thrombosis, and bone marrow failure.

2024年11月16日 · 阵发性睡眠性血红蛋白尿症（PNH）是一种慢性、进行性、危及生命的血液系统罕见疾病，已被纳入我国《第一批罕见病目录》。 据统计PNH全球年发病率为1~2/100万人，目前推测中国的发病率在 1/10 万左右。 和所有的罕见病一样，PNH患者也常常面临着“确诊难、治疗难”的挑战。 但不同的是，这个疾病还给患者带来不小的心理压力——每个早晨，患者都会很焦虑地检查自己的晨尿，一但出现酱油尿，就意味着疾病恶化，再加上日复一日的疲劳症状，不仅五 …

PNH, or Paroxysmal nocturnal hemoglobinuria, is a rare blood disease that causes red blood cells to break apart. Doctors call this breaking apart " hemolysis." It happens because the surface of a person’s blood cells are missing a protein that protects them from the body's immune system.

Paroxysmal nocturnal haemoglobinuria, or PNH, is a rare disease that may be associated with a range of symptoms.1. My-PNH.com was designed to offer you important information, advice and support with your daily life living with PNH. Find out more about PNH support groups and strategies for managing PNH. Better Living with PNH.

PNH is a rare, complex, and debilitating blood disease that can cause a range of signs and symptoms including anemia, fatigue, headaches, brain fog, shortness of breath, abdominal pain, and dark or blood- colored urine (hemoglobinuria). 1-6 If left untreated, PNH can be life-threatening. 3,5.

2025年1月2日 · How Long Can You Live With PNH? Older research showed that people with PNH lived an average of 15 to 20 years. However, newer studies have found that life expectancy continues to climb. Health experts believe that PNH treatments will soon help people live average lifespans. 7. Should People with PNH Get Vaccinated?