aHUS patients have been deliberately not engaged in the proposal to change the name aHUS into a plethora of thrombotic microangiopathy names.
To remedy that, below is an expanded fictional/factual account of a possible discussion among aHUS patients from the USA, Argentine, UK, France, Türkiye, Egypt, South Africa, Australia, and China about the proposed name change from “atypical Hemolytic Uremic Syndrome (aHUS)” to several “Specific Thrombotic Microangiopathies (STMs).” Some participants comment in their native language (with English translation) which emphasises that the name change proposals have a multi language version aspect too for the vast majority of aHUS patients in the world.
USA – Emily ” First a pro of changing to aHUS to a specific thrombotic microangiopathy or TMA is it might make diagnosis more precise for new patients by separating their specific TMA from all the others, which could speed up their treatment and get better health outcomes. But a con is that ‘aHUS’ is already known—my doctors got me on eculizumab fast because of it. A vague name might delay prognosis talks with my family. Some patients may see the new terminology as being problematic for insurance and reimbursement even more so than it is currently, giving insurance companies the chance to avoid payment I am also anxious that the new disease names will break up the aHUS community. It makes me wonder about patients who have been denied genetic testing by their doctors as being not needed or it is unaffordable and whether there be a “not genetically tested complement mediated TMA category an NGT-TMA to reflect the real world of aHUS? Or will a genetic tests be obligatory for accurate categorisation and be a cost burden on patients if insurance refuses to pay?”
Argentina – Sofía in Spanish: “Un pro de ‘Microangiopatías Trombóticas Específicas’ es que podría ayudar a los médicos a diagnosticarme más rápido al diferenciar mi caso. Pero el contra es que ‘SHUa’ ya guía mi tratamiento y me da esperanza en el pronóstico. Si el nombre se complica, ¿afectará cómo me ven los especialistas? Puede ser difícil para los médicos comprenderlo todo y los pacientes no confían en el conocimiento actual de sus médicos sobre el SHUa.
(Translation: “A pro of ‘Specific Thrombotic Microangiopathies’ is it could help doctors diagnose someone faster by distinguishing their case. But the con is that ‘aHUS’ already guides my treatment and gives me hope in my prognosis. If the name gets complicated, will it affect how specialists see me? It can be difficult for doctors to understand everything, and patients do not always trust their doctors’ current knowledge about aHUS. “
UK – James “My pro is that ‘Specific Thrombotic Microangiopathies’ might refine diagnosis, which could tailor my treatment better—I’m on a complement inhibitor but which one is best for me and could it be stopped? Would name change answer that? The con is ‘aHUS’ is straightforward; it helped my doctor spot it early, and I worry a new term might muddle my long-term prognosis. Would doctors be able to thoroughly explain the new categories so that patients can understand what they now have and why?”
France – Claire in French: “Un avantage de ‘Microangiopathies Thrombotiques Spécifiques’ est que ça pourrait affiner le diagnostic, peut-être améliorer mon traitement actuel avec des perfusions. Mais SHUa est simple—il a permis un diagnostic rapide et un pronostic clair. Un nom plus technique risque de tout embrouiller. Les patients dont la langue maternelle n’est pas l’anglais auraient du mal à comprendre les propositions, quelle communication leur sera proposée ?”
(Translation: “An advantage of ‘Specific Thrombotic Microangiopathies’ is it could direct diagnosis, maybe improve my current infusion treatment. But ‘aHUS’ is simple—it allowed a quick diagnosis and a clear prognosis. A more technical name risks confusing everything. Patients whose first language was not English would find the proposals difficult to understand , what communication will be available to them? “
Türkiye – Ahmet in Turkish: “‘Belirli Trombotik Mikroanjiyopatiler’ bir artı olarak tanıyı daha net kılabilir, bu da tedavimi—şimdi eculizumab alıyorum—iyileştirebilir. Ama atipik hemolitik üremik sendrom hızlı teşhis edildim ve prognozum belli. Yeni isim doktorlarımı şaşırtırsa ne olacak?”
(Translation: “‘Specific Thrombotic Microangiopathies’ could be a plus by making diagnosis clearer, which might improve my treatment—I’m on eculizumab now. But thanks to ‘aHUS,’ I was diagnosed quickly, and my prognosis is set. What if the new name confuses my doctors?” Will there be a Turkish version communicated to all patients?
Egypt – Fatima in Arabic:”ميزة ‘الإصابات التجلطية الدقيقة المحددة’ إنها ممكن تخلي التشخيص أدق، وده يساعد في علاجي اللي باخده دلوقتي. لكن ‘aHUS’ سهل وخلاني أعرف توقع المرض بسرعة. لو الاسم الجديد مش واضح، ممكن يأخر العلاج والتوقعات.”
Translation: “The advantage of ‘Specific Thrombotic Microangiopathies’ is it might make diagnosis more accurate, which could help with my accessing complement inhibitor treatment . But ‘aHUS’ is easy and let;s me understand my disease’s outlook quickly. If the new name isn’t clear, it could delay treatment and expectations by doctors.”
South Africa – Thandi in Zulu: “Okuncomekayo ku-‘Specific Thrombotic Microangiopathies’ ukuthi kungase kucacise ukuxilongwa, kungasiza ekwelashweni kwami okwamanje. Kodwa ‘aHUS’ ilula, yangisiza ngathola ukuxilongwa ngokushesha kanye nesimo sami esizayo. Lolu olusha lungadala ukudideka.“
(Translation: “The pro of ‘Specific Thrombotic Microangiopathies’ is it might clarify diagnosis, which could help my current treatment. But ‘aHUS’ is simple; it helped me get diagnosed quickly and know my future outlook. This new one could cause confusion rather than explanation.”
Australia – Liam “A pro is ‘Specific Thrombotic Microangiopathies’ might sharpen diagnosis, which could tweak my treatment—I’m on dialysis sometimes. But ‘aHUS’ got me sorted fast, and my prognosis is stable. A longer name might be a worry and might slow down how docs explain things to patients . It makes you think that recategorized TMAs might cause more patients to be harmed by inappropriate discontinuation of treatment decisions. “
China – Wei in Chinese (Mandarin): “‘特定血栓性微血管病’的好处是可能让诊断更精确，或许能优化我的治疗方案，我现在用的是补体抑制剂。 但‘aHUS’简单明了，让我很快确诊并了解预后。新名字太复杂，可能让医生和患者糊涂。是否有最低患者人數來證明特定名稱的合理性？會不會只有一個人？
Translation: “The benefit of ‘Specific Thrombotic Microangiopathies’ is it might make diagnosis more precise, perhaps optimizing my treatment plan—I’m on complement inhibitors now. But ‘aHUS’ is simple and clear, letting me get diagnosed quickly and understand my prognosis. Would there be a minimum number of patients to justify a specific TMA name. Could it be just one person? The new name’s too complex and might confuse doctors and patients.
Collective Statement to Those Proposing the Change
“We are aHUS patients from the USA, Argentina, UK, France, Türkiye, Egypt, South Africa, Australia, and China, and we’ve weighed the pros and cons of changing ‘aHUS’ to ‘Specific Thrombotic Microangiopathies.’
We see potential benefits: a name that could sharpen diagnosis, improve tailored treatments like eculizumab or plasma exchange, and clarify our prognosis by distinguishing our condition from other TMAs. However, we’re worried it’s less recognizable and harder to say, which could delay diagnosis, complicate treatment discussions, and cloud our prognostic understanding for us—‘aHUS’ has been key to getting us help fast and building our lives around it.
To those proposing this change, we ask: How will this new name improve our diagnosis, treatment, and prognosis in practice? Who decided this—were patients like us consulted – patients appear to have not been given enough importance in the change process of change so far?
How will you implement it so our doctors don’t miss a beat, our treatments stay on track, and our families still grasp what we’re facing? We need clear answers and a say in this—please involve us and show how you’ll roll this out without disrupting the care and clarity we rely on.”
So this discussion integrates concerns and hopes about diagnosis (speed and accuracy), treatment (current regimens and potential adjustments), and prognosis (clarity and stability), reflecting the patients’ practical and emotional stakes. Their collective questions push for transparency and assurance that the change won’t jeopardize their medical journey.
Article No. 722
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