The aHUS Alliance has taken on a new project to raise awareness for atypical hemolytic uremic syndrome (aHUS) and the needs of the patient community, according to aHUS News. The Alliance is asking patients to put together information about themselves, including a photo and what makes them “feel better.” A slideshow will be created out of all of the patient profiles, which will then be debuted on Rare Disease Day on February 28th.
Raising Awareness for aHUS
This slideshow/video project was created by the aHUS Alliance in an effort to raise awareness for the rare disease. As only two people of every one million are affected by this condition, not many people know that it exists, much less how to identify symptoms or seek a diagnosis. This lack of knowledge exists within the medical community as well; low awareness makes it difficult to diagnose and treat correctly.
To participate, you should send a picture of yourself and information about your aHUS journey to firstname.lastname@example.org by February 17th. Make sure to include how long it took you to receive the correct diagnosis, your current treatment plan, and what “feeling better” means to you.
The slideshow and video will debut on Rare Disease Day, which is celebrated on the last day of February. It was created by Eurordis in 2008 with the goal of raising money and awareness for the thousands of known rare diseases. Any funds raised will go towards research and care.
Atypical hemolytic uremic syndrome is a rare kidney function disorder. It causes fatigue, irritability, high blood pressure, thrombocytopenia, hemolytic anemia, blood in the urine, and acute kidney failure. All of these symptoms are the result of a genetic predisposition in addition to an environmental trigger. Common events that set off aHUS include the flu, chicken pox, or pregnancy. Diagnosis of this condition can be difficult, as it is very rare and faces low awareness. Doctors will look for malfunctioning kidneys, hemolytic anemia, a low platelet count, and known genetic mutations. After a diagnosis is established, doctors may recommend plasma therapy, blood transfusions, eculizumab, medications to expand blood vessels, blood pressure drugs, and other therapies.