Our cause.

Focal Segmental Glomerulosclerosis.

While we intend to expand to support children and families affected by multiple rare kidney diseases, our initial focus of education has been Focal Segmental Glomerulosclerosis (FSGS), which is Lawsyn’s diagnosis. FSGS is a rare kidney disease that is a disfunction in the kidney glomeruli (filters) where the filters become damaged or scarred (sclerosis), which causes protein (Albumin) from your blood to leak into your urine. There are various types of FSGS – Primary, Secondary, Genetic, Undetermined, Collapsing, etc.

FSGS is the leading cause of end-stage kidney failure in children and there are various studies and trials pending.

There is no FDA approved treatment for the disease, just various medications to try to reduce the amount of proteinuria (protein spilling) and hoping it will work. The short-term goal of treatment is to decrease the protein spillage and work toward periods of “remission.”

The long-term goal is to prevent relapses and deterioration of kidney function and preserve the native kidneys as long as possible before kidney transplantation. Additionally, careful attention is paid to manage and monitor the many side effects caused by not only the disease itself but the treatment, including but not limited to high blood sugars, high cholesterol, severe edema, weakening of the bones, cataracts, muscle pain or weakness, changes in skin, and slower growth and delayed puberty.

Source of information https://www.kidney.org/atoz/content/focal