Important factors contributing toward caregiver burden include sleep disturbances, impulsive and hyperactive behavior, and communication difficulties ... Caregiver burden remained high throughout the life of the patient and, coupled with the physical burden of daily care, had a cumulative impact that generated significant psychological stress. "Additionally, the authors call for changing the narrative associated with Sanfilippo: "The panel agreed that the perceived aggressive behavior of the child may be better described as physical impulsiveness and is often misunderstood by the general public. Importantly, the lack of intentionality of the child’s behavior is recognized and shared by parents and panel members ... Parents may seek to protect their child from public scrutiny and avoid situations that many engender criticism of their parenting skills." Society and culture
The community of Sanfilippo families, foundations, scientists and researchers, and industry partners and collaborators around the world have dedicated November 16 as World Sanfilippo Awareness Day. World Sanfilippo Awareness Day is about spreading awareness and sparking conversations globally about Sanfilippo syndrome. This day of awareness is in honor of the children around the world living with Sanfilippo syndrome today, and those who have died. It also honors the families of the children with Sanfilippo syndrome. November 16, 2019, was the first year observing World Sanfilippo Awareness Day. See also
Mucopolysaccharidosis
Hurler syndrome (MPS I)
Hunter syndrome (MPS II)
Morquio syndrome (MPS IV)
List of neurological conditions and disorders

References
External links
 Media related to Sanfilippo syndrome at Wikimedia Commons
Hemoglobinuria is a condition in which the oxygen transport protein hemoglobin is found in abnormally high concentrations in the urine. The condition is caused by excessive intravascular hemolysis, in which large numbers of red blood cells (RBCs) are destroyed, thereby releasing free hemoglobin into the plasma. Excess hemoglobin is filtered by the kidneys, which excrete it into the urine, giving urine a purple color. Hemoglobinuria can lead to acute tubular necrosis which is an uncommon cause of a death of uni-traumatic patients recovering in the ICU. Causes
Acute glomerulonephritis
Burns
Renal cancer
Malaria
Paroxysmal nocturnal hemoglobinuria
Microangiopathies, e.g. hemolytic-uremic syndrome (HUS), thrombotic thrombocytopenic purpura (TTP) leading to microangiopathic hemolytic anemia
Transfusion reactions
IgM autoimmune hemolytic anemia
Glucose-6-phosphate dehydrogenase deficiency
Pyelonephritis
Sickle cell anemia
Tuberculosis of the urinary tract
March hemoglobinuria secondary to repetitive impacts on the body, usually the feet
Athletic nephritis secondary to strenuous exercise
Acute lead poisoning

Diagnosis
The diagnosis is often made based on the medical history, blood samples, and a urine sample. The absence of urine RBCs and RBC casts microscopically despite a positive dipstick test suggests hemoglobinuria or myoglobinuria. The medical term for RBCs in the urine is hematuria. See also
Hematuria

References


== External links ==