The topic of aHUS complications has surfaced in multiple commentary, including our website's Forums and blogs that have referred to potential effects of aHUS damage that impact other vital organs and patient health. Multi-organ involvement is referenced by multiple researchers, and patients/families/medical personnel may access such information via links here as a starting point to further explore the topic. A new term for multi-organ involvement is "extra renal", to indicate that the impact on the body reaches beyond kidney (renal) issues. Provided via www.ahussource.com
, a website provided by Alexion Pharmaceuticals (makers of Soliris, or eculizumab), you'll find "aHUS Clinical Complications" which notes among its information that 48% of aHUS patients experience neurological symptoms, 43% of aHUS patients experience problems with their cardiovascular systems, and about 30% of patients experience complications associated with the digestive system such as an inflamed colon, abdominal pain, or other issues involving the digestive tract. This information is accompanied by solid citations from specific research studies and also from articles in medical journals by noted aHUS clinicians and investigators. (Source: http://ahussource.com/hcp/clinical-complications
. References cited: http://ahussource.com:80/references
Patients with atypical HUS may experience damage throughout the body, not just the kidneys, with possible damage to such vital organs as the heart, bowel, or brain. A visual representation that kidney issues are just 'the tip of the iceberg' regarding multi-organ involvement is noted by by a graphic at http://ahussource.com/hcp/clinical-symptoms
. Visitors of www.ahussource.com
are encouraged to view the compilation of sources cited by Alexion as they note, " ....see the references used in outlining early symptoms, please view our reference list
. " where they've made available in a comprehensive list of international references specific to aHUS research.
Those interested in further details regarding this particular atypical HUS info, Soliris (eculizumab), or Alexion's website (including Alexion's other site www.soliris.net
) may contact 1-888-SOLIRIS for further information. The Foundation for Atypical HUS (as well as this website) is an independent organization that strongly suggests that atypical HUS patients and their families connect with their own physicians and treatment teams to determine what is in the patient's best interests given each individual's status regarding disease diagnosis, treatments, and situation.