Atypical haemolytic uraemic syndrome (aHUS) can be diagnosed with simple tests and treated effectively, but in India too many patients reach the right doctor after the window to save their kidneys has closed. That was the common thread of the aHUS Awareness Day webinar we hosted online on 24 September 2026.
Why this webinar mattered
24 September is observed worldwide as aHUS Awareness Day. The day was started in 2015 by the aHUS Alliance, a global coalition of patient groups, and 2026 marks its 12th edition. It exists to raise visibility for a disease that most people, and many doctors, have never heard of.
Our founder Kamal Shah, who is also co-founder of NephroPlus, opened the session with his own story. He fell ill in 1997, aged 21, days before leaving to pursue his master's. It took time before anyone named the disease. A transplant in 1998 lasted only weeks before aHUS recurred, and he has now been on dialysis for almost 29 years.
aHUS affects roughly one or two people in a million. In a country of India's size that is still a great many families. For most of them, Kamal said, the story is one of delayed diagnosis, missed treatment windows, or a therapy that exists but is financially out of reach. Each of these is solvable, and none will be solved in silence. He framed the evening not as a commemoration but as a working session.
We organised the webinar with support from PatientsEngage, AstraZeneca and NephroPlus, and it was hosted by Aparna Mittal, founder and CEO of PatientsEngage. We were privileged to bring together five of the country's leading nephrologists and a patient speaker.
Recognising aHUS: every hour counts
Dr Arvind Bagga, who established the Indian HUS registry at AIIMS New Delhi and is now Director of Pediatrics at Indraprastha Apollo Hospitals, spoke on diagnostics from the patient's point of view.
What doctors look for. aHUS usually shows up as three problems at once: kidneys that suddenly stop working well, a low blood count (anaemia), and low platelets, the blood cells that help clotting. A simple blood test called a peripheral smear can show broken red blood cells under the microscope. Together, these point strongly to HUS.
Ruling out look-alikes. Many common illnesses, such as malaria, dengue, severe infections and lupus, can look similar. A good doctor checks for these first. If you or your family member is being treated, it is fair to ask whether other causes have been considered.
Other routine tests. Doctors will usually also check complement levels (complement is the part of the immune system that goes wrong in aHUS), a blood test called LDH that shows red cells breaking down, and a urine test. They may check the heart and pancreas too.
Genetic testing. Once other causes are ruled out, a genetic test is recommended, especially if long-term treatment is being planned. Good Indian labs now return results in about three weeks, and kidney specialists can usually explain the report without a separate geneticist.
Why speed matters so much. Everyone knows a heart attack or stroke is an emergency. Dr Bagga said aHUS deserves the same urgency. The chance to save the kidneys lasts only about 12 to 48 hours. Treatment should start straight away, either with the medicine eculizumab or with plasma exchange (a procedure that filters and replaces the plasma in the blood), without waiting for genetic results.
Two reassuring messages. First, eculizumab does not always have to be taken for life. Many patients can try stopping after about six months, with a plan to restart quickly if the disease returns. Second, carrying a gene change linked to aHUS does not mean you will definitely get ill.
A form common in Indian children. Many children aged about 4 to 17 have a type called anti-factor H antibody disease, where the body makes antibodies against one of its own protective proteins. This type responds well to two to three weeks of plasma exchange along with medicines that calm the immune system.
What aHUS means for your family
Dr Raja Ramachandran, Additional Professor of Nephrology at PGIMER Chandigarh, answered a question many families ask: if one of us has aHUS, who else is at risk? He walked through five example families, based on real cases with small changes.
His central message was that having a gene change is not the same as having the disease. Even among people with aHUS, the best labs in the world find a gene change in only about 60%. And most people who carry a gene change never become ill. For most aHUS genes, only about one in four carriers ever develops the disease.
The family member | The situation | What it means |
|---|
A healthy father | He carries two copies of a gene change and has never been ill at 58. His daughter, with only one copy, developed aHUS at 24. | Genes alone do not decide who gets sick. Something else usually has to happen too. |
A pregnant daughter | Her mother developed aHUS after giving birth and carries a gene change. She is now expecting her first child. | Pregnancy and blood loss can trigger aHUS. She should be closely watched late in pregnancy and just after delivery. |
A healthy uncle | He has the same common gene deletion (CFHR1/CFHR3) as a child in the family with aHUS, but his body makes no harmful antibodies. | He does not need to worry. Up to a third of Indians carry one copy of this deletion with no added risk. |
A brother who wants to donate a kidney | He offers a kidney to his brother with aHUS, but carries the same gene change. | Surgery could trigger aHUS in him. Relatives who carry a complement gene change are generally not accepted as kidney donors. |
A cousin with two gene changes | A healthy cousin is tested and found to carry two different gene changes. | Carrying more than one change raises the risk a lot, from about one in four to about three in four. |
Dr Raja described aHUS as needing several "hits". The first is a gene change. The second is a smaller, common genetic difference that adds risk. The third is a trigger, such as an infection, pregnancy, heavy blood loss, a transplant or certain medicines (for example, tacrolimus and cyclosporine, used after transplants). Most of the time all three are needed before someone falls ill.
If a carrier needs surgery. Kamal asked what someone with a gene change should do if they need an operation. Dr Raja advised keeping blood loss low, preventing infection with antibiotics, and watching closely afterwards for a falling blood count, falling platelets or passing less urine.
A common question from patients. One patient asked whether having one copy of the CFHR1/CFHR3 deletion rules out family donors. Dr Raja and Dr Bagga both said this deletion is found in 30 to 40% of Indians and, on its own, is not linked to aHUS. Families should discuss donor testing with their own transplant team.
The panel: the patient journey and getting treatment
The panel brought together Dr Aditi Sinha (Professor of Pediatric Nephrology, AIIMS New Delhi), Dr Manisha Sahay (Professor and Head of Nephrology, Osmania Medical College, Hyderabad), Dr Narayan Prasad (Professor and Head of Nephrology, SGPGIMS Lucknow) and Kamal Shah.
Why diagnosis is often late
Dr Sinha said every patient's journey is different, depending on which doctor they see first. Some are diagnosed quickly. Others are wrongly told they have long-term kidney disease because nobody did the simple blood smear. Dr Bagga added that many patients reach a specialist only after about two weeks, long after the critical first few days. In countries like the UK and the Netherlands, patients are usually treated within 24 to 48 hours.
The good news is that diagnosis does not need complicated tests. Simple blood and urine tests are usually enough, and a kidney biopsy is rarely needed.
Kamal said the biggest challenge for families is simply reaching a doctor who has heard of aHUS. Even after diagnosis, reliable information is hard to find. Dr Sinha felt that because aHUS is so rare, the priority is teaching doctors to recognise it and refer patients quickly to an experienced kidney specialist.
Why treatment can be hard to get
The main medicine for aHUS, eculizumab, is very expensive. The government's National Policy for Rare Diseases (NPRD) can help pay for it, but only through designated Centres of Excellence and usually only for long-term treatment, not the emergency first doses.
Dr Manisha Sahay spoke for India's roughly 410 government medical colleges, where many ordinary families are treated. These hospitals can diagnose aHUS and start plasma exchange for free, but approval for eculizumab often comes too late to save the kidneys. There are only 16 Centres of Excellence in the country, and one for all of Telangana. She suggested linking medical colleges to these centres in a "hub-and-spoke" network so care is available closer to home.
Dr Sinha and Dr Bagga explained that even at the Centres of Excellence, emergency treatment is not free and is largely paid out of pocket. Dr Prasad said that when families can afford it, he asks them to buy one or two doses early while the NPRD application is processed.
Kamal described our advocacy for keeping a few emergency doses at every Centre of Excellence. Treatment could then start immediately, with funding approval sought afterwards.
Confusion about genetic tests
Kamal said many patients and doctors are unsure whether a genetic test is required. Doctors on the panel agreed it is not needed to start treatment. However, some centres still require it before approving NPRD funding, while others, such as PGIMER Chandigarh, accept the doctor's diagnosis. Dr Bagga noted that most Indian patients do not show a gene change but still deserve treatment. Specialists are working on a shared national statement to clear this up.
Using the medicine wisely
The doctors also cautioned that eculizumab should only be used when it is truly aHUS, not for look-alike conditions. Starting it and then stopping after one or two doses, often for financial reasons, is also a problem. Dr Sinha suggested a quick-response expert team, or "TMA board", to decide on emergency treatment within hours.
A patient asked whether starting treatment before all test results are in is risky. Dr Prasad said eculizumab is generally safe but raises the risk of certain serious infections, such as meningitis. Patients are given antibiotics and vaccinations to protect them.
How the patient community can help
• Dr Sinha: a web page where patients can send questions and be connected to the right expert anywhere in the country.
• Dr Sahay: a system where no family navigates aHUS alone, with help on funding, follow-up care, genetic, transplant and pregnancy counselling, and emotional support.
• Dr Prasad: expert-reviewed FAQs and short videos on social media, and continued efforts to show the government that early treatment costs far less than a lifetime of dialysis.
Lived experience: why peer support matters
Arjun Arora, whose aHUS story is published on our website, closed the programme. He holds a master's in business from Canada and moved back to India after he fell ill. He now runs a plywood manufacturing business in his hometown of Yamunanagar, Haryana.
Arjun said he has met few other aHUS patients. Kamal was the one who gave him hope and encouragement and helped him make sense of his situation. Through that connection he reached Dr Raja, who explained that his heterozygous result is common in the population and may not stand in the way of a transplant. He was later connected with Dr Bagga.
His suggestion for the community was simple: patients can mention aHUS in their social media bios, so that anyone who visits their profile might ask what it is. Aparna Mittal added that every shared story breaks silence and stigma, and helps others realise they are not alone.
Key takeaways for patients and families
1. Treat it as an emergency. Sudden kidney failure with a low blood count and low platelets needs urgent care. The chance to save the kidneys lasts only about 12 to 48 hours.
2. Ask for a kidney specialist early. If aHUS is suspected, ask to be referred to an experienced nephrologist or a Centre of Excellence without delay.
3. Simple tests can confirm it. A blood smear, blood count and urine test are usually enough. A kidney biopsy is rarely needed.
4. Treatment should not wait for genetic results. Genetic tests take about three weeks. They help plan long-term care but should not delay the first treatment.
5. Treatment may not be lifelong. Many patients can try stopping eculizumab after about six months, under their doctor's guidance, with a plan to restart if needed.
6. A gene change is not a diagnosis. Most relatives who carry a gene change never become ill. Illness usually needs a trigger such as infection, pregnancy or surgery.
7. Talk to your doctor about family planning, surgery and donation. Pregnant women with a family history need close monitoring. Relatives who carry a complement gene change are generally not suitable kidney donors.
8. Know the funding routes. NPRD support is available through Centres of Excellence, mainly for long-term treatment. Emergency doses are often paid out of pocket, so ask your team early about options.
9. Finish what you start. Stopping treatment after one or two doses can undo its benefit. Discuss costs and plans with your doctor before starting.
10. You are not alone. Connecting with other patients and families through our community can bring information, hope and practical support.
Looking ahead
Kamal opened the evening with a warning. Somewhere, someone is walking into an emergency room with anaemia, low platelets and failing kidneys, and their outcome may depend on whether the doctor has heard of aHUS. The webinar showed that India now has the expertise, the tests and the treatments. The work that remains is getting them to every patient in time. We will keep pushing for that, alongside doctors, policymakers and families.
If you or someone you know is living with aHUS, you are not alone. Share your story, bring us your questions, and connect with others in our community. The full webinar recording is available on our Atypical HUS India YouTube channel.
(This article summarises an educational webinar and is not medical advice. Please speak to your nephrologist about your own care.)
