HN is a problem of growing concern in the United States and throughout the world, according to the Hereditary Nephritis Foundation and to researchers at the University of Utah. HN is a group of inherited kidney diseases. The different varieties of HN have different patterns of inheritance, and different rates of progression. The kidney disease, manifested by microscopic traces of blood cells and proteins in urine, is present and generally mild at birth. Especially in males, HN gradually progresses to kidney failure [end-stage renal disease or ESRD] that is fatal unless the person receives dialysis treatment or kidney transplantation. In some kindreds, affected males suffer ESRD as teenagers, while it happens at 30-40 years of age in other kindreds. Some kindreds with HN also have some combination of hereditary progressive malformation of the lens of the eye [lenticonus], other unusual eye problems, and deafness.
From its discovery in 1902 through about 1960, HN was thought to be extremely rare. However, it has become clear that about one in 5000 persons carries the gene for HN [that is, has HN causing genetic misinformation in gene that determines part of kidney structure]. HN accounts for about 3% of ESRD in children, 3-5% of ESRD in men, and a fraction of a percent of ESRD in women.
In addition to intensive research being conducted at the University of Utah and elsewhere, many local people have become personally involved in fighting the disease through the Hereditary Nephritis Foundation. The Foundation has three primary objectives: to inform the public about HN; to raise money for continued research to combat the disease; and to be a support group for affected families. Because Medicare and other organizations pay for medical treatment of ESRD, and because funds are limited, the Foundation does not pay for medical care of individuals.
The Hereditary Nephritis Foundation needs your help. If you would like more information about HN or the work of the Foundation, please contact:
Mr Kay R. Johnson, Coordinator
Hereditary Nephritis Foundation
1390 West 6690 South, #202H
Murray, Utah 84123-6914
Voice and fax 801-262-5901