A 38-year-old woman in Portugal developed atypical hemolytic uremic syndrome (aHUS) despite showing no typical markers of the disease after she experienced gastrointestinal inflammation, according to a case report. “This case highlights the diagnostic and management challenges in aHUS when traditional disease markers are absent and emphasizes the importance…
News
Physicians in India described the case of atypical hemolytic uremic syndrome (aHUS) that manifested as loss of vision in one eye in a 30-year-old man. The patient was successfully managed with plasma therapy, because Soliris (eculizumab) was not available. “This is the first described case to our knowledge…
It may be safe for some adults with atypical hemolytic uremic syndrome (aHUS) to discontinue treatment once they’re clinically stable, but a decision depends on a complex group of factors, a study based on interviews with aHUS experts indicates. The patient’s health status, personal preferences, and access to close…
A weight-based regimen for administering Soliris (eculizumab) in people with atypical hemolytic uremic syndrome (aHUS) may allow patients to reach therapeutic levels of the medication with fewer infusions, saving time and money. “We suggest to introduce this dosing schedule as the standard of care to improve therapeutic success…
A 60-year-old man with atypical hemolytic uremic syndrome (aHUS) was successfully treated with Soliris (eculizumab) using a personalized dosing regimen based on clinical responses, according to a recent case study. Clinicians lowered the dose of the medication in parallel with clinical improvements and eventually discontinued treatment instead of…
Changes in platelet counts over the first two weeks on Ultomiris (ravulizumab-cwvz) in people with atypical hemolytic uremic syndrome (aHUS) may help predict the patients’ long-term response to such treatment, according to a new study. An analysis found that patients’ early platelet responses were linked to kidney improvements at…
Bone abnormalities were reported in two teenage girls who were on long-term treatment with Soliris (eculizumab) for atypical hemolytic uremic syndrome (aHUS) associated with a deficiency of the complement factor H (FH). Clinicians are unsure whether these previously undescribed bone abnormalities, including pain, deformities, and joint swelling, were…
Initial treatment with the drug Soliris (eculizumab) and immunosuppressive therapies was safe and effective for four children with severe atypical hemolytic uremic syndrome (aHUS) who had self-reactive antibodies against the complement factor H (FH). That’s according to a study from Argentina, which reported that all of the children…
Genetic testing may allow for the timely use of anti-complement therapy for atypical hemolytic uremic syndrome (aHUS), even if an infection with Shiga toxin-producing Escherichia coli (STEC), a trigger of the typical form of the disease, is present and initially upstages the correct diagnosis of aHUS. In a…
The National Organization for Rare Disorders (NORD) is offering patient assistance programs specifically for people in the U.S. with atypical hemolytic uremic syndrome (aHUS), to help cover out-of-pocket medical costs and emergency nonmedical expenses in their daily lives. These initiatives come under NORD’s RareCare program, which was…
Recent Posts
- Study describes ‘unusual trilogy’ of aHUS, Fabry disease, heart disorder
- My complicated health journey now includes post-exertional malaise
- Soliris part of strategy for complex kidney transplant in aHUS case
- My community helps me navigate the ultra-rare reality of living with aHUS
- Dual therapy manages aHUS with high blood pressure: Case report
- Caregivers are the unsung heroes of the rare disease world
- aHUS drug Soliris helps reverse organ failure in young woman in rare case
- A ‘glow-up’ is just the boost I’ve needed in life with rare diseases
- Unexpected gene therapy finding may help treat two rare kidney diseases
- How aHUS treatment led to my first tattoos