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History & Background

The Halpin Foundation had its beginnings in trying to comprehend a kidney disease called Membranous Nephropathy (MN).

Commentary by Foundation President Joan R. Halpin
Membranous, we were told, is the most common primary cause of nephrotic syndrome in adult patients. It is characterized by basement membrane thickening and sub-epithelial immune deposits. We came to understand this more simply as a form of progressive kidney disease which causes sclerosis and interferes with filtration. These type lesions have been seen in patients with diabetes mellitus, renal vein thrombosis, cancer and autoimmune diseases such as systemic lupus erythematsus. It has been described as-and sometimes is still considered-idiopathic.

Membranous is a predominately adult, male disease. Therefore, when our 14-year old son was diagnosed with membranous in the winter of 1989, we were incredulous. He had presented with hematuria/blood and protein during his yearly physical examination, and a subsequent biopsy was performed at Yale-New Haven Hospital under the direction of Dr.Norman Siegel, head of pediatric nephrology.

We were asked if anyone in our family had kidney disease. Yes, a cousin of mine had died of some form of kidney problem. (I would afterward undertake the study of genealogy to discover the family's medical history; we now have more than 1500 relatives in our database.) We ascertained that there were several cases of Bright's disease (non-specific kidney disease), diabetic nephropathy and renal cell carcinoma in my husband's family.

Next, we were asked if our son had had a strep infection or had used NSAID. Had he been exposed to formaldehyde, mercury, or gold?

It was explained that about 20% of patients showed spontaneous remission with or without steroid treatment. Of the remaining patients some have rapid deterioration of renal function and in others the course is indolent and renal function declines slowly.

In order to address his condition, our son was treated with high doses of alternate-day prednisone. The disease remitted initially.

Subsequently, we were encouraged when the Wall Street Journal on July 26, in 1990 reported "New Therapy May Block Leading Cause of Chronic Kidney Failure." The article goes on to state that the therapy would have been the first to stop the scarring involved in glomerulonephritis. The study quoted in the WSJ was from the prestigious journal Nature. Now, many years after this promising study, treatment remains relatively unchanged. The origin and treatment of the disease still remain controversial.

The questions lingered. Could there be a hereditary predisposition? What might have triggered MN? Was there an autoimmune component? What of this inflammation that was outlined in Nature?

We have found few answers because membranous is an under funded and understudied disease. In the years since the study in Nature in 1990, there has been little success in other treatment options. Drug development is challenging, and we see little interest in "orphan diseases."

Membranous is not a glory disease. There are no ribbons, marathons, walks, or vocal advocates for membranous. Yet it remains a debilitating and deadly disease!