As the world slips into September 25th,  another aHUS Awareness Day passes.
From the aHUS alliance‘s view it was the best ever and there is a lot to reflect on.
One example of what the day was about came from an unexpected source.
A nephrologist from Taiwan, Dr  I-Ru Chen, a follower of the alliance, told the story of a 45 year old aHUS patient to the China Times newspaper and they published  on it on aHUS Awareness Day.
The patient is one of probably around 50 aHUS patients in Taiwan
She  was prepared to die rather than leave her family destitute because of the cost of treatment  but was saved by her family, her friends and her society.
On aHUS Awareness Day her voice was heard by her country.
A story that resonates with us all as lmembers of one family responsible for one another” .
Written in Chinese ( with a rough English translation after each paragraph) the article is reproduced below.
 

( above : I-Ru Chen MD, from the Chinese Department of Nephrology, said that health insurance has included “terminal complement inhibitors” in some conditions to help patients with atypical hemolytic uremic syndrome. (provided by Dr. I-Ru Chen ))
 
位45歲女性因發燒、關節疼痛住院，期間忽然失明、急性腎衰竭、呼吸衰竭、癲癇而緊急送往加護病房搶救，最後確診是罕見「非典型溶血性尿毒症候群（aHUS）」。患者聽到1年1600萬的高昂藥費，不願拖累家人，希望將存款留給子女，選擇放棄治療。經醫療團隊努力及院方社福基金、家屬與各方團體支援，病情方得控制，一家人得以團圓。
A 45-year-old woman was hospitalized for fever and joint pain. She was suddenly sent to the intensive care unit for sudden blindness, acute renal failure, respiratory failure, and epilepsy. The final diagnosis was a rare “atypical hemolytic uremic syndrome (aHUS).” The patient heard the high drug cost of 16 million yuan ( just over half a million US dollars)) a year and was unwilling to drag down her  family. She hoped to leave the deposits to her children and choose to give up treatment. Thanks to the efforts of the medical team and the support of the social welfare fund, family and various parties, the condition can be controlled and the family can be reunited.
負責此案的中國醫藥大學附設醫院腎臟科主治醫師陳怡儒表示，非典型溶血性尿毒症候群，是一種會造成全身器官衰竭、可瞬間奪命的罕見疾病。人體在遇到感染，甚至手術、懷孕等刺激，體內的「補體系統」會活化引起發炎反應對抗，但非典型溶血性尿毒症候群患者的補體系統調控因子，卻如同煞車失靈般異常活化，導致身體各器官發炎，小血管遭破壞，如同《復仇者聯盟》裡的薩諾斯「彈指」，紅血球就會瞬間消失，變成大量血栓在體內流竄，「血栓塞到哪、那裡就壞死」，也因此造成各式症狀，如腦中風、心肌梗塞、腎衰竭等。
Dr I-Ru Chen the attending physician of the Department of Nephrology, attached to the Hospital of China Medical University, said that atypical hemolytic uremic syndrome is a rare disease that causes systemic organ failure and can be kill instantly. When the human body encounters infection, even surgery, pregnancy and other stimuli, the body’s “complement system” will activate the inflammatory response, but the complement system regulators of patients with atypical hemolytic uremic syndrome are abnormally activated like a brake failure, leading to the body. The organs are inflamed and the small blood vessels are destroyed. As in the “Avengers”, Thanos “snap”, the red blood cells will disappear instantly, and a large number of blood clots will flow in the body. “Where the blood clots are, it will be necrotic.” Cause various symptoms, such as stroke, myocardial infarction, kidney failure and so on.
陳怡儒表示，該疾病目前無法完全治癒，僅能靠每日血漿置換支持，若無效，需盡速注射「末端補體抑制劑」搶救受波及的器官，越早使用越有機會減少日後洗腎機率，改善生活品質。但1年藥費高達1600萬元，多數家庭無力負擔，若沒有援助，多半只能無助地面對人生的句點，更有患者因無力負擔而病逝。
Dr I-Ru Chen said that the disease can not be completely cured at present, and can only rely on daily plasma exchange support. If it is not effective, it is necessary to inject “terminal complement inhibitor” as soon as possible to rescue the affected organs. The sooner the use, the more chance to reduce the chance of dialysis in the future. Improve the quality of life. However, the drug cost in one year is as high as 16 million yuan. Most families cannot afford it. If there is no assistance, most of them can only help to face the end of life, and some patients die because they cannot afford it
患者身受罕病打擊已身心俱疲，「有藥卻付不起」更是絕望。感謝萬分的是，健保已於今年6月將「末端補體抑制劑」納入部分條件給付，大大給予非典型溶血性尿毒症候群患者一個重拾生存的權利，讓患者能再度戰勝疾病，回歸溫暖的家、並再度回饋社會。
The patient has suffered from physical shocks and is exhausted. “There is no medicine to pay” is even more desperate. Thanks to the fact that Health Insurance has included “terminal complement inhibitors” in some conditions in June this year, which greatly gives patients with atypical hemolytic uremic syndrome a right to regain their survival, so that patients can once again overcome the disease and return to a warm home. And give back to the community again.