If you have atypical hemolytic uremic syndrome (aHUS), you may want to consider enrolling in the ongoing global aHUS registry study still recruiting patients. Information collected through this registry will, among other uses, help researchers to better understand, diagnose, and treat this rare disease. What is aHUS? aHUS…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…
Atypical hemolytic uremic syndrome (aHUS) can lead to multiple health problems that affect the day-to-day life of a patient. Here are some ways in which family members can help support a person living with this extremely rare disease. What is aHUS? aHUS is characterized by blood clotting…
It can be exhausting and stressful to be the caregiver for someone who has a chronic disorder such as atypical hemolytic uremic syndrome (aHUS). Because stress can trigger anxiety and depression, among other issues, it is imperative that you practice self-care in order to stay healthy.
When you’re living with a very rare disorder such as atypical hemolytic uremic syndrome (aHUS), with its host of potential symptoms, you may find it difficult to stay motivated. Here are some ideas that may help spur you on. Stick to times you’re most productive aHUS can cause…
If you have atypical hemolytic uremic syndrome (aHUS), you need to have regular blood tests to check the health of your kidneys and your platelet and red blood cell counts. It is important to track your results over time. Here’s some information about how to do that,…
Raising awareness of rare chronic disorders such as atypical hemolytic uremic syndrome, or aHUS, could mean more patients benefiting from earlier diagnosis and treatment. Here are some points about aHUS, and the ongoing efforts to make it more widely known. What is aHUS? One of about…
Leading up to atypical hemolytic uremic syndrome (aHUS) Awareness Day on Sept. 24, the aHUS Alliance is seeking participation from the global community for a new video project. As in previous years, the nonprofit organization will include submissions in a video and slideshow that will be…
For people with atypical hemolytic uremic syndrome (aHUS), self-care is important to help cope with the multiple health problems resulting from the disease, including hemolytic anemia, thrombocytopenia (low platelet count), kidney failure, nausea, shortness of breath, fatigue, heart disease, and seizures. If you…
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